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RE: [susac_syndrome] New Patient of Susac Syndrome.....

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  • Sandy McCourt
    Hi Lisa, My name is Sandy and I am 28 years old. I live in Toronto, Canada. In May 2001, I took two mini strokes in my final term of university which caused me
    Message 1 of 28 , Aug 10, 2007
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      Hi Lisa,

      My name is Sandy and I am 28 years old. I live in Toronto, Canada. In May 2001, I took two mini strokes in my final term of university which caused me to drop out but I was able to finish it later. I also lost almost 50% of hearing in both ears which I have just learned to live with as there has not been much change. I believe I had encephalopathy but you would have to ask my mom who is also on this site (Mom?). I have not had many problems with my eyes which is what confuses the doctors. In July 2001 they had diagnosed me with MS but sent me for a second opinion who diagnosed me with Susac's. I then moved to Toronto and changed neurologists. My current doctor believes I could have a touch of both diseases as well and they don't want to commit themselves to a specific diagnosis.

      I had my most recent MRI in mid July and go for the results on Monday afternoon actually. I was fortunate enough to have a wonderful baby boy last year and while pregnant I felt absolutely TERRIFIC! I used to take the IVIG treatments but discontinued that since I was pregnant. I still feel well overall but I have been experiencing some problems with my feet so we will see what the doctor says on Monday.

      Attitude is a huge part to this disease. While going through everything, I know my attitude towards others perhaps was not the greatest (right mom?) but I came through it quite well and am very fortunate to live a pretty normal life. There are such varying degrees to this disease and it definitely is hard to understand because no two cases are the same.

      Best of luck to your daughter with everything. Stay positive!

      Sandy
      Toronto, Canada




       

       


      From: "lisagrindey" <lisagrindey@...>
      Reply-To: susac_syndrome@yahoogroups.com
      To: susac_syndrome@yahoogroups.com
      Subject: [susac_syndrome] New Patient of Susac Syndrome.....
      Date: Thu, 09 Aug 2007 15:17:19 -0000

      Hi!
      Finally found this site. We are new to this site. My 18 year old
      daughter was recently diagnosed this Jan. w/ Susac Syndrome. She has
      been in treatment since April. I would love to talk to some of you who
      are living with this syndrome. She would love to talk to someone who
      understands her journey. Can anyone introduce themselves and their
      stories. We would love to hear from you. She is in her second year of
      college. She has been a trooper with nurses coming in her dorm for
      treatments and friends getting a little freaked out with all her
      medical stuff. It would just be nice if she had someone who could
      understand her.We look forward to hearing from any of you.
      Thank you!
      Lisa Grindey (Caitlin's Mom)
      California




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    • lisagrindey
      Hi Sandy!! This is such a thrill to talk w/ you. I really do understand the not being so nice thing and I continually try to let it go. I can t say it
      Message 2 of 28 , Aug 11, 2007
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        Hi Sandy!!
        This is such a thrill to talk w/ you. I really do understand the "not
        being so nice" thing and I continually try to let it go. I can't say
        it doesn't hurt to see my child/young adult go through this. I can see
        by other stories that Caitlin does indeed have a classic case of Susac
        as the doctors said. And fortunately we had an early diagnosis w/
        immediate treatment. I am hoping for the best for her. Did you notice
        any episodes happening while in treatment. Caitlin doesn't seem to be
        having any that we notice her last episode was the last couple of days
        of Jan. Coincidence?? She began treatments in April, we don't know.
        This disease seems to be so unpredictable. She is on heavy doses of
        IVIG every month for 5 days in a row , but she is doing o.k. some
        really hard days but mostly manageable. Her attitude is great! I agree
        w/ you that this plays a big role in this. She refuses to let this
        define who she is. The tough part has been seeing some of her
        "friends" I use this word lightly, not believe her because she looks
        o.k. from the outside. Did you experience this? She did have a
        portacath(sp?) surgically put into her chest about 3 weeks ago and her
        last treatment seemed to go easier. Her veins just don't stand up to
        all this meds. She doesn't get the migraines anymore but she does get
        occasional headaches, these are manageable for her. I worry about
        another episode taking anymore from her. She calls me her "hellicopter
        mom" because I have a tenancy to hover around her. I can't help it! I
        worry that I am doing everything possible to help her, and the doctors
        I'm sure love me, ha!. Dr. Susac asked for a picture of Caitlin and
        myself and I asked my husband why me? He jokingly responded that he
        probably wants a face to put with the mouth. I know I ask alot. But,we
        have seen alot of doctors and they sometimes are interested and others
        seem to give up too soon. This frustrates me. I am so glad to hear you
        had a great pregnancy...that gives me hope. I want to share this
        message w/ Caitlin so that she can talk to someone young who would
        understand what this feels like to be in her shoes. After all I am
        just the mom....you know? I know she loves me and appreciates me but
        sometimes I just get on her nerves w/ this whole thing. Early on she
        used to just want me to stop calling the doctors and maybe this would
        all stop on its own...well we all know the answer to that one. I
        believe we were blessed to have a team of doctors who were all trying
        hard to find an answer. It was her ophthalmologist who called it first
        and the others needed some convincing because they had never heard of
        this. I almost kissed the man....and then I felt strange to be
        relieved to have a diagnosis because I didn't know what this all meant
        for her or us for that matter. Thank you again for sharing..I hope we
        can talk again.
        Deeply honored,
        Lisa
      • lyn1faye
        Hi Sandy My son was 18 months old when I got Susac s and I had a 2 year old son. I was 36 years of age I can t imagine getting it a younger age. I was very
        Message 3 of 28 , Aug 14, 2007
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          Hi Sandy
          My son was 18 months old when I got Susac's and I had a 2 year old
          son. I was 36 years of age I can't imagine getting it a younger age. I
          was very active working 5 to 6 days a week taking my boys to daycare
          and picking them up like a normal mom was, After I got this I did not
          know anyone and was losing control of my body functions. My husband
          could not take care of me he did not have the patients for none of it
          he is so neg. about it all. They to thought I had MS and now my Nuro.
          thinks I my have some else but he said that two years ago.

          If it was not for my sister's and my mom taking me to doctors all the
          time when I got back from Mayo clinic I don't know what I would have done.
          But any way I got this 2001 and has gone threw a lot since then my
          waling went from good to bad and worse ever now I walk with a cane but
          my balance is poor and my feet ache all the time b/c you are so young
          I'm sure you will not go threw all of what I have.
          I to took IVIG number of times and CEMO and had had MRI'S 3 times.
          Well have to get now email me if you like to talk more about it.
          My church has help so much and my friends from there.
          Take care
          Blessing
          Linda Hamilton
          Morning View KY
          home email address: lindahamilton@...
        • lyn1faye
          ... believe the ... finally ... reason ... roundabout ... pulls the ... Hi Lisa Grindey (Caitlin s Mom) I have susac since 2001 I can not image getting it at a
          Message 4 of 28 , Aug 14, 2007
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            --- In susac_syndrome@yahoogroups.com, "lisagrindey" <lisagrindey@...>
            wrote:
            >
            > Hello there Jayne!!
            > What a delight hearing from you. Yes, Caitlin is receiving IVIG
            > treatments 5 days every month 440cc along with oral steriods. This
            > takes about 4 1/2 hours each time. As well as she receives a dose of
            > Rituximab (1000 mg)every 6mos. We will be reviewing her in Oct. to see
            > if we continue with this level or lower her down. She hasn't had any
            > more episodes since Jan. but she hasn't had any vision restored. It
            > seems to be permenant damage. As well as her hearing loss. Yes this is
            > a very big and expensive treatment. How old did you discover this out
            > with you? Did you develop encephalopathy? How is your family dealing
            > with this? I am sorry if I ask so many questions. They thought Caitlin
            > had MS too. Because of the leisions on her brain. They are in the
            > corpus colluseum. I am excited to talk with you. I have been waiting
            > to talk to someone other than a doctor and get more personal
            > perspectives on this whole thing. Thanks, We'll chat soon with you.
            > Have a great day!
            > Lisa
            > --- In susac_syndrome@yahoogroups.com, "Jayne Ashbrook"
            > <jashbrook@> wrote:
            > >
            > > Hi Lisa
            > >
            > > I have had so many MRI's and in those I have been double checked
            > each time
            > > to find out whether I also had MS. There was some doubt in the
            > beginning as
            > > the specialist thought I may have been misdiagnosed in the beginning
            > with MS
            > > before I got Susac's. However following a biopsy and then a very
            > lengthy MRI
            > > (90 mins)early in the Susac's diagnosis, the results showed I had both
            > > conditions. I am blind in one eye and my balance is not good –
            > although I am
            > > getting some improvement on that now.
            > >
            > >
            > >
            > > Funnily enough, the lumbar puncture I also had, said I didn't have
            > MS. The
            > > IVIG (Plasma Intragram infusions) I have every 28 days are I
            believe the
            > > saving medication for me. OK quite often I think the treatment is
            > making me
            > > worse but I have persevered and can now really see a difference
            finally
            > > kicking in.
            > >
            > >
            > >
            > > I have been having IVIG for four years now - that's 48 treatments in
            > total.
            > > They are as I said before, every 28 days. This I think will be
            > changing to
            > > every 21 days very shortly after my next MRI in 2 weeks time. The
            reason
            > > being I start to wind down a week before I'm due for IVIG treatment
            > and get
            > > really quite bad with symptoms and it's hard to cope. However after
            > the IVIG
            > > treatment after probably 2-3 days I feel quite good and stay
            > reasonably well
            > > for 2-3 weeks until I wind down again! Then it's back on the
            roundabout
            > > again....
            > >
            > >
            > >
            > > Has your daughter had IVIG treatment? Dr Susac's recommends the
            > Intragram
            > > infusion treatment for Susac's and is convinced this treatment
            pulls the
            > > sufferer out of the condition in a rough time period of 5-6 years.
            > And it
            > > slows down the increase of symptoms. Then remission kicks in. I'd be
            > > interested to hear. I will write again.
            > >
            > > Cheers, Jayne (PS: I am English but live in Australia)
            > >
            > >
            > >
            > >
            > >
            > >
            > >
            > > Jayne Ashbrook
            > >
            > > jashbrook@
            > >
            > > Mbl: 0400363873
            > >
            > >
            > >
            > > _____
            > >
            > > From: susac_syndrome@yahoogroups.com
            > [mailto:susac_syndrome@yahoogroups.com]
            > > On Behalf Of lisagrindey
            > > Sent: Friday, 10 August 2007 1:17 AM
            > > To: susac_syndrome@yahoogroups.com
            > > Subject: [susac_syndrome] New Patient of Susac Syndrome.....
            > >
            > >
            > >
            > > Hi!
            > > Finally found this site. We are new to this site. My 18 year old
            > > daughter was recently diagnosed this Jan. w/ Susac Syndrome. She has
            > > been in treatment since April. I would love to talk to some of you who
            > > are living with this syndrome. She would love to talk to someone who
            > > understands her journey. Can anyone introduce themselves and their
            > > stories. We would love to hear from you. She is in her second year of
            > > college. She has been a trooper with nurses coming in her dorm for
            > > treatments and friends getting a little freaked out with all her
            > > medical stuff. It would just be nice if she had someone who could
            > > understand her.We look forward to hearing from any of you.
            > > Thank you!
            > > Lisa Grindey (Caitlin's Mom)
            > > California
            > >
            Hi Lisa Grindey (Caitlin's Mom)
            I have susac since 2001 I can not image getting it at a younger age
            than that I was at 36 I had a son 18 months old and a two year old son
            too. I have gone threw a lot of IVIG treatments. I to lost my hearing
            in my right ear and my waling stinks my feet hurt really bad having
            arthritis in both knees my legs ache also. I also have lost my site
            from taking steroids so long I got cataracts in both eyes it was like
            walking around in the fog all the time I could not see to read at all
            now I have to wear reading glasses strong ones I was told it should
            not be that way at all but I will check into that later. It is a real
            pain when you had 20/20 vision now down to hardly nothing. Well keep
            positive.
            I due not wish this illness on anyone b/c I gone threw so much. I
            recently hear a lot about Intra gram infusion treatment I don't know a
            lot about it but I will.
            I need to call my Nuro. Dr. about if I am a good caniagate for having
            it done plus a have a few other questions.
            Please feel free to ask me as much b/c I will answer as best as I can.
            All my effects are on my right side.
            Take care/ be positive about everything.
            Blessing
            Linda Hamilton
            Morning View KY
            my home email address: lindahamilton@...
          • Sandy McCourt
            Hi Lisa, Well, I had my appointment with my neurologist yesterday and an interesting one it was. He now says I have relapsing-remitting MS for sure and not
            Message 5 of 28 , Aug 14, 2007
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              Hi Lisa,

              Well, I had my appointment with my neurologist yesterday and an interesting one it was. He now says I have relapsing-remitting MS for sure and not Susac's. He said my MRI (which I have every year) is not indicative of Susac's but rather MS. He has felt that way the whole time but now the radiologist does too. He said I am definitely an unusual case. He gave me a book he wrote on MS and told me to take extra Vitamin D. He said that I could start taking injection therapy if I wanted but I didn't get the impression that he really thinks it is necessary. I believe this would consist of one injection weekly forever. I have much research to do before I decide. I have only had one episode of the MS so I don't think I am just too keen on starting to take drugs every week or anything but I will see what I find out when I research and read his book.

              I hope everyone is doing okay.

              Sandy




               

               


              From: "lisagrindey" <lisagrindey@...>
              Reply-To: susac_syndrome@yahoogroups.com
              To: susac_syndrome@yahoogroups.com
              Subject: [susac_syndrome] Re: New Patient of Susac Syndrome.....
              Date: Sat, 11 Aug 2007 07:51:54 -0000

              Hi Sandy!!
              This is such a thrill to talk w/ you. I really do understand the "not
              being so nice" thing and I continually try to let it go. I can't say
              it doesn't hurt to see my child/young adult go through this. I can see
              by other stories that Caitlin does indeed have a classic case of Susac
              as the doctors said. And fortunately we had an early diagnosis w/
              immediate treatment. I am hoping for the best for her. Did you notice
              any episodes happening while in treatment. Caitlin doesn't seem to be
              having any that we notice her last episode was the last couple of days
              of Jan. Coincidence? ? She began treatments in April, we don't know.
              This disease seems to be so unpredictable. She is on heavy doses of
              IVIG every month for 5 days in a row , but she is doing o.k. some
              really hard days but mostly manageable. Her attitude is great! I agree
              w/ you that this plays a big role in this. She refuses to let this
              define who she is. The tough part has been seeing some of her
              "friends" I use this word lightly, not believe her because she looks
              o.k. from the outside. Did you experience this? She did have a
              portacath(sp? ) surgically put into her chest about 3 weeks ago and her
              last treatment seemed to go easier. Her veins just don't stand up to
              all this meds. She doesn't get the migraines anymore but she does get
              occasional headaches, these are manageable for her. I worry about
              another episode taking anymore from her. She calls me her "hellicopter
              mom" because I have a tenancy to hover around her. I can't help it! I
              worry that I am doing everything possible to help her, and the doctors
              I'm sure love me, ha!. Dr. Susac asked for a picture of Caitlin and
              myself and I asked my husband why me? He jokingly responded that he
              probably wants a face to put with the mouth. I know I ask alot. But,we
              have seen alot of doctors and they sometimes are interested and others
              seem to give up too soon. This frustrates me. I am so glad to hear you
              had a great pregnancy... that gives me hope. I want to share this
              message w/ Caitlin so that she can talk to someone young who would
              understand what this feels like to be in her shoes. After all I am
              just the mom....you know? I know she loves me and appreciates me but
              sometimes I just get on her nerves w/ this whole thing. Early on she
              used to just want me to stop calling the doctors and maybe this would
              all stop on its own...well we all know the answer to that one. I
              believe we were blessed to have a team of doctors who were all trying
              hard to find an answer. It was her ophthalmologist who called it first
              and the others needed some convincing because they had never heard of
              this. I almost kissed the man....and then I felt strange to be
              relieved to have a diagnosis because I didn't know what this all meant
              for her or us for that matter. Thank you again for sharing..I hope we
              can talk again.
              Deeply honored,
              Lisa




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            • mterhune@les.com
              Hi all, Have not been here in ages and ages, but, I still read everyones emails. I was initially diagnosed with Susac s in 1996. I was on IVIG etc. I studied
              Message 6 of 28 , Aug 14, 2007
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                Hi all,

                 

                Have not been here in ages and ages, but, I still read everyones emails.  I was initially diagnosed with Susac's in 1996. I was on IVIG etc.  I studied everything the was on Susacs and then some. Started egroup etc.

                In 2000 I went to Mayo Clinic and the changed my diagnosis to Systemic Lupus, Meniere's Disease, Hashimotos Thyroiditis,Sjogrens syndrome and Raynauds syndrome.  My Rheumie thinks Mixed connective tissue disorder. - Cataracts from the steroids etc.

                I just wanted to say ya'll hang in there and be strong. 

                I still have terrible balance issues from the Menieres and deaf in one ear.  My Lupus is mostly under control with meds and most important I am still here and there is still joy in my life!

                Hugs to all

                Melissa

                NOTE: This electronic message and attachment(s), if any, contains information which is intended solely for the designated recipient(s).  Unauthorized disclosure, copying, distribution, or other use of the contents of this message or attachment(s), in whole or in part, is prohibited without the express authorization of the author of this message.
              • lisagrindey
                ... had both ... you who ... year of ... Hello Linda! What is so interesting is that alot of you are talking about some sort of leg and feet problems. Caitlin
                Message 7 of 28 , Aug 15, 2007
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                  --- In susac_syndrome@yahoogroups.com, "lyn1faye" <lindahamilton@...>
                  wrote:
                  >
                  > --- In susac_syndrome@yahoogroups.com, "lisagrindey" <lisagrindey@>
                  > wrote:
                  > >
                  > > Hello there Jayne!!
                  > > What a delight hearing from you. Yes, Caitlin is receiving IVIG
                  > > treatments 5 days every month 440cc along with oral steriods. This
                  > > takes about 4 1/2 hours each time. As well as she receives a dose of
                  > > Rituximab (1000 mg)every 6mos. We will be reviewing her in Oct. to see
                  > > if we continue with this level or lower her down. She hasn't had any
                  > > more episodes since Jan. but she hasn't had any vision restored. It
                  > > seems to be permenant damage. As well as her hearing loss. Yes this is
                  > > a very big and expensive treatment. How old did you discover this out
                  > > with you? Did you develop encephalopathy? How is your family dealing
                  > > with this? I am sorry if I ask so many questions. They thought Caitlin
                  > > had MS too. Because of the leisions on her brain. They are in the
                  > > corpus colluseum. I am excited to talk with you. I have been waiting
                  > > to talk to someone other than a doctor and get more personal
                  > > perspectives on this whole thing. Thanks, We'll chat soon with you.
                  > > Have a great day!
                  > > Lisa
                  > > --- In susac_syndrome@yahoogroups.com, "Jayne Ashbrook"
                  > > <jashbrook@> wrote:
                  > > >
                  > > > Hi Lisa
                  > > >
                  > > > I have had so many MRI's and in those I have been double checked
                  > > each time
                  > > > to find out whether I also had MS. There was some doubt in the
                  > > beginning as
                  > > > the specialist thought I may have been misdiagnosed in the beginning
                  > > with MS
                  > > > before I got Susac's. However following a biopsy and then a very
                  > > lengthy MRI
                  > > > (90 mins)early in the Susac's diagnosis, the results showed I
                  had both
                  > > > conditions. I am blind in one eye and my balance is not good –
                  > > although I am
                  > > > getting some improvement on that now.
                  > > >
                  > > >
                  > > >
                  > > > Funnily enough, the lumbar puncture I also had, said I didn't have
                  > > MS. The
                  > > > IVIG (Plasma Intragram infusions) I have every 28 days are I
                  > believe the
                  > > > saving medication for me. OK quite often I think the treatment is
                  > > making me
                  > > > worse but I have persevered and can now really see a difference
                  > finally
                  > > > kicking in.
                  > > >
                  > > >
                  > > >
                  > > > I have been having IVIG for four years now - that's 48 treatments in
                  > > total.
                  > > > They are as I said before, every 28 days. This I think will be
                  > > changing to
                  > > > every 21 days very shortly after my next MRI in 2 weeks time. The
                  > reason
                  > > > being I start to wind down a week before I'm due for IVIG treatment
                  > > and get
                  > > > really quite bad with symptoms and it's hard to cope. However after
                  > > the IVIG
                  > > > treatment after probably 2-3 days I feel quite good and stay
                  > > reasonably well
                  > > > for 2-3 weeks until I wind down again! Then it's back on the
                  > roundabout
                  > > > again....
                  > > >
                  > > >
                  > > >
                  > > > Has your daughter had IVIG treatment? Dr Susac's recommends the
                  > > Intragram
                  > > > infusion treatment for Susac's and is convinced this treatment
                  > pulls the
                  > > > sufferer out of the condition in a rough time period of 5-6 years.
                  > > And it
                  > > > slows down the increase of symptoms. Then remission kicks in. I'd be
                  > > > interested to hear. I will write again.
                  > > >
                  > > > Cheers, Jayne (PS: I am English but live in Australia)
                  > > >
                  > > >
                  > > >
                  > > >
                  > > >
                  > > >
                  > > >
                  > > > Jayne Ashbrook
                  > > >
                  > > > jashbrook@
                  > > >
                  > > > Mbl: 0400363873
                  > > >
                  > > >
                  > > >
                  > > > _____
                  > > >
                  > > > From: susac_syndrome@yahoogroups.com
                  > > [mailto:susac_syndrome@yahoogroups.com]
                  > > > On Behalf Of lisagrindey
                  > > > Sent: Friday, 10 August 2007 1:17 AM
                  > > > To: susac_syndrome@yahoogroups.com
                  > > > Subject: [susac_syndrome] New Patient of Susac Syndrome.....
                  > > >
                  > > >
                  > > >
                  > > > Hi!
                  > > > Finally found this site. We are new to this site. My 18 year old
                  > > > daughter was recently diagnosed this Jan. w/ Susac Syndrome. She has
                  > > > been in treatment since April. I would love to talk to some of
                  you who
                  > > > are living with this syndrome. She would love to talk to someone who
                  > > > understands her journey. Can anyone introduce themselves and their
                  > > > stories. We would love to hear from you. She is in her second
                  year of
                  > > > college. She has been a trooper with nurses coming in her dorm for
                  > > > treatments and friends getting a little freaked out with all her
                  > > > medical stuff. It would just be nice if she had someone who could
                  > > > understand her.We look forward to hearing from any of you.
                  > > > Thank you!
                  > > > Lisa Grindey (Caitlin's Mom)
                  > > > California
                  > > >
                  > Hi Lisa Grindey (Caitlin's Mom)
                  > I have susac since 2001 I can not image getting it at a younger age
                  > than that I was at 36 I had a son 18 months old and a two year old son
                  > too. I have gone threw a lot of IVIG treatments. I to lost my hearing
                  > in my right ear and my waling stinks my feet hurt really bad having
                  > arthritis in both knees my legs ache also. I also have lost my site
                  > from taking steroids so long I got cataracts in both eyes it was like
                  > walking around in the fog all the time I could not see to read at all
                  > now I have to wear reading glasses strong ones I was told it should
                  > not be that way at all but I will check into that later. It is a real
                  > pain when you had 20/20 vision now down to hardly nothing. Well keep
                  > positive.
                  > I due not wish this illness on anyone b/c I gone threw so much. I
                  > recently hear a lot about Intra gram infusion treatment I don't know a
                  > lot about it but I will.
                  > I need to call my Nuro. Dr. about if I am a good caniagate for having
                  > it done plus a have a few other questions.
                  > Please feel free to ask me as much b/c I will answer as best as I can.
                  > All my effects are on my right side.
                  > Take care/ be positive about everything.
                  > Blessing
                  > Linda Hamilton
                  > Morning View KY
                  > my home email address: lindahamilton@...
                  >
                  Hello Linda!
                  What is so interesting is that alot of you are talking about some sort
                  of leg and feet problems. Caitlin hasn't complained of that maybe some
                  tingling sometimes. I do notice alot of various diagnosis. I can see
                  this is very difficult to diagnose or anything with neurological seems
                  to be so complexed. Caitlin is feeling well, getting ready for the new
                  college year to start. I hope she feels fine...she is taking on more
                  this semester because she is trying to catch up. You never know how
                  she is going to feel with her medications and her episodes. I have
                  called all her doctors and told them to start her testing. They are
                  going to run a bunch of opthalmology & now I want a new MRI. Just to
                  keep up to date on her development. Now, after treatment should I
                  expect some change in her MRI? I really don't know what to expect. I
                  will need all this data to appeal my insurance to have her next dose
                  of Rituxin in Nov. I have her on our insurance now while she is in
                  school but what happens later?? I only have her on until she is
                  24..then how does she go to another insurance??and is this considered
                  pre-existing? I worry about her and her future. Many people have told
                  us to disable her...I don't know....she seems o.k. now but what about
                  later???
                • lisagrindey
                  Hello Melissa, How do you manage with all those diagnoses?? Do you work? Do you have a family? I am impressed with everyone here and they continue on with
                  Message 8 of 28 , Aug 15, 2007
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                    Hello Melissa,
                    How do you manage with all those diagnoses?? Do you work? Do you have
                    a family? I am impressed with everyone here and they continue on with
                    their fight. Very impressive. They have said my daughter is very
                    classic case of Susac. Not too complicated yet. I hope, we will see.
                    Did you always have problems with your legs? What about
                    encephalopathy? Can anyone elaborate of this for me. I understand the
                    definition I just want to know how you are able to function? work? and
                    how was your family there for you that really helped you the most. I
                    worry about that part. Does this disease come back worse each episode?
                    Best Regards,
                    Lisa
                  • mterhune@les.com
                    Hi again Lisa, I didn t really give you a good descrip of the brain fogs and enceph issues. Really some days I couldn t have told you if I was coming or going.
                    Message 9 of 28 , Aug 16, 2007
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                      Hi again Lisa,

                       

                      I didn't really give you a good descrip of the brain fogs and enceph issues.

                      Really some days I couldn't have told you if I was coming or going. 

                      I forgot peoples' names (including my husbands).

                      I could clearly picture an object in my mind...like a coffee cup, but I could not remember what it was called (that is a horrible, anxiety filled moment!).  The frustration and fear was overwhelming!!!

                      I would get in the car to go to drive to a destination but then forget where I was driving to (I then quit driving because I was afraid I was going to hurt someone).

                      I could not remember peoples faces or names.

                      If someone told me something and asked me to repeat it back to them I couldn't.

                      I couldn't follow a series of simple commands becasue I couldn't remember what they were.

                      I cried very (emotionally) easily and was very sensitive to everything (sight and sound) around me.

                      I HATED when the wind blew and hit me in the face...it made me jump just like someone poked me with a needle and sometimes I would cry or be very anxious.

                      I didn't let very many people touch me for 3 years because it "hurt" me physically.

                      I hated people coming up to me or talking to me from my left side...it's weird but, I still do hate that LOL.

                      The steroids did help most of the problems, but, I still have my bad or REALLY BAD days.

                      How is your daughter doing?  What symptoms are showing...how is her eyesight?

                      Take care

                      Melissa

                      NOTE: This electronic message and attachment(s), if any, contains information which is intended solely for the designated recipient(s).  Unauthorized disclosure, copying, distribution, or other use of the contents of this message or attachment(s), in whole or in part, is prohibited without the express authorization of the author of this message.
                    • lisagrindey
                      Hello Melissa, Well so far to date, my daughter, Caitlin is missing 20% in each eye the lower section of sight. She finally got her drivers license back after
                      Message 10 of 28 , Aug 18, 2007
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                        Hello Melissa,
                        Well so far to date, my daughter, Caitlin is missing 20% in each eye
                        the lower section of sight. She finally got her drivers license back
                        after
                        6 mos of suspending it until Doctors approval. She is missing about
                        70% of low frequency hearing in her left ear. She still has lesions in
                        her brain but no encephalopathy as of yet. (that we know) We just
                        dropped her off at college today. I swear that is the hardest thing
                        for me. I get scared to let her go. She is so brave and longs to be
                        "normal" like all the other girls. My husband says to let her do
                        this...it is so hard. She now will have her treatments at school and
                        the nurse comes to her and gives it for the whole week. I just feel
                        better when I can see her and how she is feeling. I just can tell by
                        the look on her face if it is a bad day or a good day. I struggle with
                        the idea of putting her on disability or not. I know between all the
                        medical bills and time off from our work to be at all her appointments
                        I find it hard to help at all if any with her school finances. People
                        have told us to put her on disability. The problem is she looks
                        fine..(Gosh, I hate when people tell us that)She can get around except
                        when she has an episode or if she gets sick from the treatments. She
                        couldn't find a job that would allow her to take or adjust a week
                        every month for her treatments. She didn't make any money this summer
                        for her school year. We had to help her out. But the problem is I have
                        3 other daughters. I don't know how much longer I can go on like this.
                        How is she suppose to go on and live a normal life. Who can I talk to
                        about this and other things??She is on our insurance as long as she is
                        full time enrolled in school....then what?? I feel so scared for her.
                        Do you know anything about this??
                      • lyn1faye
                        Hi Melissa I think I emailed you last few days about me don t get so hard on your self just in time you will get better I have had it since 2001 and I to
                        Message 11 of 28 , Aug 24, 2007
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                          Hi Melissa
                          I think I emailed you last few days about me don't get so hard on your
                          self just in time you will get better I have had it since 2001 and I
                          to forgot a lot my son's birthdays and my yungest son was 18 months
                          and I forgot a lot about his delivery I know I had a c section I
                          remember a lot from pictures my family and I took a lot of pictures so
                          I look at them. So don't get so hard on your self it will come bad get
                          stay around positive people.
                          I too did not drive for 5 years but I was not scared when I started I
                          was but I ask Christ to help me and support me and I was strong and
                          brave. I know I explained my whole story to you I wish you could email
                          me to me home email address. it is lindahamilton@.... Please
                          don't hesitate to talk to me about anything I will let you know what I
                          know if I don't I will find out for you.
                          Where due you live at?

                          Keep in touch.
                          Blessing
                          Linda Hamilton
                          15337 Madison Pike
                          Morning View KY 41063
                        • miss_va_31
                          ... have ... with ... see. ... the ... and ... I ... episode? ... Hello- I have been said that I am a susac s syndrome candidate. I have been trying to get
                          Message 12 of 28 , Nov 3, 2007
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                            --- In susac_syndrome@yahoogroups.com, "lisagrindey"
                            <lisagrindey@...> wrote:
                            >
                            >
                            >
                            > Hello Melissa,
                            > How do you manage with all those diagnoses?? Do you work? Do you
                            have
                            > a family? I am impressed with everyone here and they continue on
                            with
                            > their fight. Very impressive. They have said my daughter is very
                            > classic case of Susac. Not too complicated yet. I hope, we will
                            see.
                            > Did you always have problems with your legs? What about
                            > encephalopathy? Can anyone elaborate of this for me. I understand
                            the
                            > definition I just want to know how you are able to function? work?
                            and
                            > how was your family there for you that really helped you the most.
                            I
                            > worry about that part. Does this disease come back worse each
                            episode?
                            > Best Regards,
                            > Lisa
                            >


                            Hello-

                            I have been said that I am a susac's syndrome candidate. I have
                            been trying to get all the information that I can and have had
                            trouble because there just isn't that much out there. All of it is
                            in medical terms. I have been diagnosed with the ears, eyes and now
                            they are waiting for me to go "crazy" before the doctors will
                            diagnose me with Susac's syndrome. This site is great, maybe I can
                            get my questions answered from people that are living with this
                            disease. I haven't been able to work for 3 and half months now.
                            The vertigo gets so bad and the nausea too. The headaches get
                            really bad too. I haven't been able to drive for the same amount of
                            time. Luckily, my dad has been able to take me to all my doctor
                            apointments. I live with my dad and stepmother and they aren't all
                            that understanding about the not working and think that I am
                            contageous to other people and that my immune system is down. My
                            step mother thinks that she is going to make me sick, give me a cold
                            or the flu or something. The doctors say that none of this is true
                            though. She makes me feel unwelcome to stay there which is really
                            stressing me out. The only treatment I have undergone is
                            prednisone. I have a spinal tap and second MRI next week. I'm
                            really scared about what is to come in the future with this syndrome.

                            How has your general life routine changed? Can life go back to
                            normal when treatment starts? Did you go through a depressed
                            stage? Any feedback and information that anyone can give would be
                            greatly appreciated.

                            Best regards,
                            Christina (33 yo, in Virginia)
                          • superwelshish
                            ... understand ... work? ... most. ... now ... of ... cold ... syndrome. ... Hey Christina... and welcome to the group ;-) Firstly try not to worry about the
                            Message 13 of 28 , Nov 3, 2007
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                              --- In susac_syndrome@yahoogroups.com, "miss_va_31" <miss_va_31@...>
                              wrote:
                              >
                              > --- In susac_syndrome@yahoogroups.com, "lisagrindey"
                              > <lisagrindey@> wrote:
                              > >
                              > >
                              > >
                              > > Hello Melissa,
                              > > How do you manage with all those diagnoses?? Do you work? Do you
                              > have
                              > > a family? I am impressed with everyone here and they continue on
                              > with
                              > > their fight. Very impressive. They have said my daughter is very
                              > > classic case of Susac. Not too complicated yet. I hope, we will
                              > see.
                              > > Did you always have problems with your legs? What about
                              > > encephalopathy? Can anyone elaborate of this for me. I
                              understand
                              > the
                              > > definition I just want to know how you are able to function?
                              work?
                              > and
                              > > how was your family there for you that really helped you the
                              most.
                              > I
                              > > worry about that part. Does this disease come back worse each
                              > episode?
                              > > Best Regards,
                              > > Lisa
                              > >
                              >
                              >
                              > Hello-
                              >
                              > I have been said that I am a susac's syndrome candidate. I have
                              > been trying to get all the information that I can and have had
                              > trouble because there just isn't that much out there. All of it is
                              > in medical terms. I have been diagnosed with the ears, eyes and
                              now
                              > they are waiting for me to go "crazy" before the doctors will
                              > diagnose me with Susac's syndrome. This site is great, maybe I can
                              > get my questions answered from people that are living with this
                              > disease. I haven't been able to work for 3 and half months now.
                              > The vertigo gets so bad and the nausea too. The headaches get
                              > really bad too. I haven't been able to drive for the same amount
                              of
                              > time. Luckily, my dad has been able to take me to all my doctor
                              > apointments. I live with my dad and stepmother and they aren't all
                              > that understanding about the not working and think that I am
                              > contageous to other people and that my immune system is down. My
                              > step mother thinks that she is going to make me sick, give me a
                              cold
                              > or the flu or something. The doctors say that none of this is true
                              > though. She makes me feel unwelcome to stay there which is really
                              > stressing me out. The only treatment I have undergone is
                              > prednisone. I have a spinal tap and second MRI next week. I'm
                              > really scared about what is to come in the future with this
                              syndrome.
                              >
                              > How has your general life routine changed? Can life go back to
                              > normal when treatment starts? Did you go through a depressed
                              > stage? Any feedback and information that anyone can give would be
                              > greatly appreciated.
                              >
                              > Best regards,
                              > Christina (33 yo, in Virginia)
                              >

                              Hey Christina... and welcome to the group ;-)

                              Firstly try not to worry about the going crazy bit because thats not
                              really what happens, well thats not whats happened to my partner, its
                              more of an unawareness of what happening around you and conffusion(
                              well thats how it is for Jen ) and the good news is that it does not
                              last for very long even if you do get it. Early treatment with the
                              prendisone will give you a huge advantage, so that can only be a good
                              thing !!
                              If you are diagnosed with Susacs there is no doubt that it will
                              change your life... i know thats not nice to hear, but its the truth
                              and yes depression will also be a big problem.

                              The good news is...... that one day you should beable to return to a
                              near normal life, ( although it is highly unlikely your hearing will
                              improve ) the doctors say it usually runs its course over a two to
                              five year period.


                              I think most of the other sufferers will agree that having a strong
                              mental attitude is the best way to say your going to beat this !!!


                              I wish you all the luck in the world !!!

                              Kind regards
                              Richard
                            • miss_va_31
                              ... you ... on ... is ... can ... all ... true ... really ... be ... not ... its ... not ... good ... truth ... a ... will ... strong ... Hey Richard- Thank
                              Message 14 of 28 , Nov 4, 2007
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                                --- In susac_syndrome@yahoogroups.com, "superwelshish"
                                <rblackborow@...> wrote:
                                >
                                > --- In susac_syndrome@yahoogroups.com, "miss_va_31" <miss_va_31@>
                                > wrote:
                                > >
                                > > --- In susac_syndrome@yahoogroups.com, "lisagrindey"
                                > > <lisagrindey@> wrote:
                                > > >
                                > > >
                                > > >
                                > > > Hello Melissa,
                                > > > How do you manage with all those diagnoses?? Do you work? Do
                                you
                                > > have
                                > > > a family? I am impressed with everyone here and they continue
                                on
                                > > with
                                > > > their fight. Very impressive. They have said my daughter is very
                                > > > classic case of Susac. Not too complicated yet. I hope, we will
                                > > see.
                                > > > Did you always have problems with your legs? What about
                                > > > encephalopathy? Can anyone elaborate of this for me. I
                                > understand
                                > > the
                                > > > definition I just want to know how you are able to function?
                                > work?
                                > > and
                                > > > how was your family there for you that really helped you the
                                > most.
                                > > I
                                > > > worry about that part. Does this disease come back worse each
                                > > episode?
                                > > > Best Regards,
                                > > > Lisa
                                > > >
                                > >
                                > >
                                > > Hello-
                                > >
                                > > I have been said that I am a susac's syndrome candidate. I have
                                > > been trying to get all the information that I can and have had
                                > > trouble because there just isn't that much out there. All of it
                                is
                                > > in medical terms. I have been diagnosed with the ears, eyes and
                                > now
                                > > they are waiting for me to go "crazy" before the doctors will
                                > > diagnose me with Susac's syndrome. This site is great, maybe I
                                can
                                > > get my questions answered from people that are living with this
                                > > disease. I haven't been able to work for 3 and half months now.
                                > > The vertigo gets so bad and the nausea too. The headaches get
                                > > really bad too. I haven't been able to drive for the same amount
                                > of
                                > > time. Luckily, my dad has been able to take me to all my doctor
                                > > apointments. I live with my dad and stepmother and they aren't
                                all
                                > > that understanding about the not working and think that I am
                                > > contageous to other people and that my immune system is down. My
                                > > step mother thinks that she is going to make me sick, give me a
                                > cold
                                > > or the flu or something. The doctors say that none of this is
                                true
                                > > though. She makes me feel unwelcome to stay there which is
                                really
                                > > stressing me out. The only treatment I have undergone is
                                > > prednisone. I have a spinal tap and second MRI next week. I'm
                                > > really scared about what is to come in the future with this
                                > syndrome.
                                > >
                                > > How has your general life routine changed? Can life go back to
                                > > normal when treatment starts? Did you go through a depressed
                                > > stage? Any feedback and information that anyone can give would
                                be
                                > > greatly appreciated.
                                > >
                                > > Best regards,
                                > > Christina (33 yo, in Virginia)
                                > >
                                >
                                > Hey Christina... and welcome to the group ;-)
                                >
                                > Firstly try not to worry about the going crazy bit because thats
                                not
                                > really what happens, well thats not whats happened to my partner,
                                its
                                > more of an unawareness of what happening around you and conffusion(
                                > well thats how it is for Jen ) and the good news is that it does
                                not
                                > last for very long even if you do get it. Early treatment with the
                                > prendisone will give you a huge advantage, so that can only be a
                                good
                                > thing !!
                                > If you are diagnosed with Susacs there is no doubt that it will
                                > change your life... i know thats not nice to hear, but its the
                                truth
                                > and yes depression will also be a big problem.
                                >
                                > The good news is...... that one day you should beable to return to
                                a
                                > near normal life, ( although it is highly unlikely your hearing
                                will
                                > improve ) the doctors say it usually runs its course over a two to
                                > five year period.
                                >
                                >
                                > I think most of the other sufferers will agree that having a
                                strong
                                > mental attitude is the best way to say your going to beat this !!!
                                >
                                >
                                > I wish you all the luck in the world !!!
                                >
                                > Kind regards
                                > Richard
                                >

                                Hey Richard-

                                Thank you for the words of incouragement. Has Jen been able to work
                                at all through this whole thing? Either full or part time? When she
                                was diagnosed did you both do your homework to find out as much as
                                you could about Susac's? Did she have IVIG treatment? If so, how
                                did her body react to the treatment? I hope that these questions
                                aren't too personal and if they are please let me know. I have so
                                many questions and no one that has gone through it to ask.

                                Thanks again,
                                Christina
                              • superwelshish
                                ... very ... will ... have ... it ... and ... now. ... amount ... doctor ... My ... ( ... the ... to ... to ... this !!! ... work ... she ... Jens not worked a
                                Message 15 of 28 , Nov 4, 2007
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                                  --- In susac_syndrome@yahoogroups.com, "miss_va_31" <miss_va_31@...>
                                  wrote:
                                  >
                                  > --- In susac_syndrome@yahoogroups.com, "superwelshish"
                                  > <rblackborow@> wrote:
                                  > >
                                  > > --- In susac_syndrome@yahoogroups.com, "miss_va_31" <miss_va_31@>
                                  > > wrote:
                                  > > >
                                  > > > --- In susac_syndrome@yahoogroups.com, "lisagrindey"
                                  > > > <lisagrindey@> wrote:
                                  > > > >
                                  > > > >
                                  > > > >
                                  > > > > Hello Melissa,
                                  > > > > How do you manage with all those diagnoses?? Do you work? Do
                                  > you
                                  > > > have
                                  > > > > a family? I am impressed with everyone here and they continue
                                  > on
                                  > > > with
                                  > > > > their fight. Very impressive. They have said my daughter is
                                  very
                                  > > > > classic case of Susac. Not too complicated yet. I hope, we
                                  will
                                  > > > see.
                                  > > > > Did you always have problems with your legs? What about
                                  > > > > encephalopathy? Can anyone elaborate of this for me. I
                                  > > understand
                                  > > > the
                                  > > > > definition I just want to know how you are able to function?
                                  > > work?
                                  > > > and
                                  > > > > how was your family there for you that really helped you the
                                  > > most.
                                  > > > I
                                  > > > > worry about that part. Does this disease come back worse each
                                  > > > episode?
                                  > > > > Best Regards,
                                  > > > > Lisa
                                  > > > >
                                  > > >
                                  > > >
                                  > > > Hello-
                                  > > >
                                  > > > I have been said that I am a susac's syndrome candidate. I
                                  have
                                  > > > been trying to get all the information that I can and have had
                                  > > > trouble because there just isn't that much out there. All of
                                  it
                                  > is
                                  > > > in medical terms. I have been diagnosed with the ears, eyes
                                  and
                                  > > now
                                  > > > they are waiting for me to go "crazy" before the doctors will
                                  > > > diagnose me with Susac's syndrome. This site is great, maybe I
                                  > can
                                  > > > get my questions answered from people that are living with this
                                  > > > disease. I haven't been able to work for 3 and half months
                                  now.
                                  > > > The vertigo gets so bad and the nausea too. The headaches get
                                  > > > really bad too. I haven't been able to drive for the same
                                  amount
                                  > > of
                                  > > > time. Luckily, my dad has been able to take me to all my
                                  doctor
                                  > > > apointments. I live with my dad and stepmother and they aren't
                                  > all
                                  > > > that understanding about the not working and think that I am
                                  > > > contageous to other people and that my immune system is down.
                                  My
                                  > > > step mother thinks that she is going to make me sick, give me a
                                  > > cold
                                  > > > or the flu or something. The doctors say that none of this is
                                  > true
                                  > > > though. She makes me feel unwelcome to stay there which is
                                  > really
                                  > > > stressing me out. The only treatment I have undergone is
                                  > > > prednisone. I have a spinal tap and second MRI next week. I'm
                                  > > > really scared about what is to come in the future with this
                                  > > syndrome.
                                  > > >
                                  > > > How has your general life routine changed? Can life go back to
                                  > > > normal when treatment starts? Did you go through a depressed
                                  > > > stage? Any feedback and information that anyone can give would
                                  > be
                                  > > > greatly appreciated.
                                  > > >
                                  > > > Best regards,
                                  > > > Christina (33 yo, in Virginia)
                                  > > >
                                  > >
                                  > > Hey Christina... and welcome to the group ;-)
                                  > >
                                  > > Firstly try not to worry about the going crazy bit because thats
                                  > not
                                  > > really what happens, well thats not whats happened to my partner,
                                  > its
                                  > > more of an unawareness of what happening around you and conffusion
                                  (
                                  > > well thats how it is for Jen ) and the good news is that it does
                                  > not
                                  > > last for very long even if you do get it. Early treatment with
                                  the
                                  > > prendisone will give you a huge advantage, so that can only be a
                                  > good
                                  > > thing !!
                                  > > If you are diagnosed with Susacs there is no doubt that it will
                                  > > change your life... i know thats not nice to hear, but its the
                                  > truth
                                  > > and yes depression will also be a big problem.
                                  > >
                                  > > The good news is...... that one day you should beable to return
                                  to
                                  > a
                                  > > near normal life, ( although it is highly unlikely your hearing
                                  > will
                                  > > improve ) the doctors say it usually runs its course over a two
                                  to
                                  > > five year period.
                                  > >
                                  > >
                                  > > I think most of the other sufferers will agree that having a
                                  > strong
                                  > > mental attitude is the best way to say your going to beat
                                  this !!!
                                  > >
                                  > >
                                  > > I wish you all the luck in the world !!!
                                  > >
                                  > > Kind regards
                                  > > Richard
                                  > >
                                  >
                                  > Hey Richard-
                                  >
                                  > Thank you for the words of incouragement. Has Jen been able to
                                  work
                                  > at all through this whole thing? Either full or part time? When
                                  she
                                  > was diagnosed did you both do your homework to find out as much as
                                  > you could about Susac's? Did she have IVIG treatment? If so, how
                                  > did her body react to the treatment? I hope that these questions
                                  > aren't too personal and if they are please let me know. I have so
                                  > many questions and no one that has gone through it to ask.
                                  >
                                  > Thanks again,
                                  > Christina
                                  >Hi Christina,
                                  Jens not worked a single day since being diagnosed, she still has
                                  alot of problems with basic stuff like walking. Were not sure if the
                                  IVIG worked as Jen seemed to come out of the confussion on her own,
                                  but there were no side effects which was good.
                                  The first thing i did when we she was diagnosed was to email Dr Susac
                                  and he said that Jen would get better with time.
                                  If you do a google search on the net for " myfox twin cities susac
                                  syndrome " it will bring up a video interview of a girl over there in
                                  the states with Susacs, well worth watching !!!
                                  Below ive copied a study from March this year its a study of 100
                                  sufferers.

                                  Any questions you have dont hesitate to ask and im sure if i carnt
                                  answer them someone else in the group will
                                  Warm regards
                                  Richard
                                  Long-Term Outcome in Susac Syndrome.

                                  Article

                                  Medicine. 86(2):93-102, March 2007.
                                  Aubart-Cohen, Fleur MD; Klein, Isabelle MD, PhD; Alexandra, Jean-
                                  Francois MD; Bodaghi, Bahram MD, PhD; Doan, Serge MD; Fardeau,
                                  Christine MD; Lavallee, Philippa MD; Piette, Jean-Charles MD; Hoang,
                                  Phuc Le MD, PhD; Papo, Thomas MD
                                  Abstract:
                                  Susac syndrome is characterized by the clinical triad of
                                  encephalopathy, hearing loss, and retinal artery branch occlusions,
                                  mostly in young women. To our knowledge, long-term outcome and impact
                                  of pregnancy have not been specifically addressed. We report a series
                                  of 9 patients (7 female, 2 male) followed at the same institution,
                                  with special emphasis on clinical outcome including pregnancy and
                                  long-term sequelae. Clinical, brain magnetic resonance imaging (MRI),
                                  funduscopy, retinal angiography, and audiogram data were recorded
                                  every 3-12 months. We also analyzed the 92 previously reported cases
                                  of Susac syndrome.

                                  Mean follow-up was 6.4 years. Age at onset was 30.4 years. The first
                                  symptom occurred between April and September in 7 of 9 patients in
                                  the current study, and in 68% of all patients. The complete triad at
                                  onset was clinically obvious in only 1 of 9 patients. Brain
                                  involvement was heralded by headache and symptoms of encephalopathy.
                                  Cerebrospinal fluid was abnormal in 5 patients showing pleocytosis
                                  (mean, 24.6; range, 6-85 cells/mL) and elevated protein level (mean,
                                  210; range, 113-365 mg/dL). Over time, quantitative brain MRI
                                  analysis showed that the number of lesions diminished and did not
                                  parallel clinical flares, and MRI never normalized. At the end of
                                  follow-up, no patient had severe impairment, and all but 1 returned
                                  to work.

                                  Inner ear involvement was present at onset in 2 patients and occurred
                                  in others with a mean delay of 11 months. Initially unilateral in 3,
                                  it became bilateral in all. Mean hearing loss was 34 dB (range, 15-70
                                  dB). Hearing loss never improved, either spontaneously or under
                                  treatment. The eye was involved at onset in 8 patients, and after 3
                                  years in 1. All had multiple bilateral retinal artery branch
                                  occlusions and/or dye leakage with hyperfluorescence of the arterial
                                  wall on fluorescein angiography. Over time, angiography normalized in
                                  3 patients. In others, it was still abnormal at the end of follow-up
                                  (range, 1.5-10 yr). On late findings, fluorescein leakage was more
                                  frequent than true arterial occlusion. Eye involvement was mostly
                                  asymptomatic, unilateral, peripheral, and resumed spontaneously to
                                  remit in other sites over time.

                                  Corticosteroids were efficient to treat encephalopathy, with relapses
                                  occurring when the dosage was tapered. Steroid treatment did not
                                  improve hearing loss or prevent new retinal arteriolar occlusions.
                                  Anticoagulation had a role in treating encephalopathy and retinal
                                  arteriolar occlusions.

                                  Three patients had 4 pregnancies. Two pregnancies needed induced
                                  abortion. One pregnancy was uneventful. One pregnancy was complicated
                                  with Susac disease flare in the early postpartum period.

                                  In conclusion, at the end of follow-up, most patients had returned to
                                  work and none had severe impairment. Pregnancy may affect the course
                                  of Susac syndrome, with relapse of encephalopathy postpartum. Our
                                  main finding was that the course of Susac syndrome is not self-
                                  limited as previously thought, since isolated retinal arteriolar
                                  involvement may occur as a very late manifestation.

                                  (C) 2007 Lippincott Williams & Wilkins, Inc.
                                • gerbie15066
                                  Hello my name is Renee from PA. I was diagnosed with susac in 2001. I currently have no hearing in my left ear. I have returned completly to the life I had 6
                                  Message 16 of 28 , Nov 4, 2007
                                  • 0 Attachment
                                    Hello my name is Renee from PA. I was diagnosed with susac in 2001.
                                    I currently have no hearing in my left ear. I have returned
                                    completly to the life I had 6 years ago it was a long strugle but you
                                    do get your life back. If you are willing to make a trip to PA I
                                    could get you in contact with my neorologist who is excellent about
                                    this disease.
                                    I am not going to lye it is a hard strugle but you will get through
                                    this just go for the treatments they do help you out alot. Your
                                    imune system is down but it will get better. I am 34 years old I was
                                    28 when diagnosed. If you have any question PLEASE do not hesitate
                                    to ask. We all from this group know what you are going through.

                                    Renee



                                    --- In susac_syndrome@yahoogroups.com, "superwelshish"
                                    <rblackborow@...> wrote:
                                    >
                                    > --- In susac_syndrome@yahoogroups.com, "miss_va_31" <miss_va_31@>
                                    > wrote:
                                    > >
                                    > > --- In susac_syndrome@yahoogroups.com, "superwelshish"
                                    > > <rblackborow@> wrote:
                                    > > >
                                    > > > --- In susac_syndrome@yahoogroups.com, "miss_va_31"
                                    <miss_va_31@>
                                    > > > wrote:
                                    > > > >
                                    > > > > --- In susac_syndrome@yahoogroups.com, "lisagrindey"
                                    > > > > <lisagrindey@> wrote:
                                    > > > > >
                                    > > > > >
                                    > > > > >
                                    > > > > > Hello Melissa,
                                    > > > > > How do you manage with all those diagnoses?? Do you work?
                                    Do
                                    > > you
                                    > > > > have
                                    > > > > > a family? I am impressed with everyone here and they
                                    continue
                                    > > on
                                    > > > > with
                                    > > > > > their fight. Very impressive. They have said my daughter is
                                    > very
                                    > > > > > classic case of Susac. Not too complicated yet. I hope, we
                                    > will
                                    > > > > see.
                                    > > > > > Did you always have problems with your legs? What about
                                    > > > > > encephalopathy? Can anyone elaborate of this for me. I
                                    > > > understand
                                    > > > > the
                                    > > > > > definition I just want to know how you are able to
                                    function?
                                    > > > work?
                                    > > > > and
                                    > > > > > how was your family there for you that really helped you
                                    the
                                    > > > most.
                                    > > > > I
                                    > > > > > worry about that part. Does this disease come back worse
                                    each
                                    > > > > episode?
                                    > > > > > Best Regards,
                                    > > > > > Lisa
                                    > > > > >
                                    > > > >
                                    > > > >
                                    > > > > Hello-
                                    > > > >
                                    > > > > I have been said that I am a susac's syndrome candidate. I
                                    > have
                                    > > > > been trying to get all the information that I can and have
                                    had
                                    > > > > trouble because there just isn't that much out there. All of
                                    > it
                                    > > is
                                    > > > > in medical terms. I have been diagnosed with the ears, eyes
                                    > and
                                    > > > now
                                    > > > > they are waiting for me to go "crazy" before the doctors will
                                    > > > > diagnose me with Susac's syndrome. This site is great, maybe
                                    I
                                    > > can
                                    > > > > get my questions answered from people that are living with
                                    this
                                    > > > > disease. I haven't been able to work for 3 and half months
                                    > now.
                                    > > > > The vertigo gets so bad and the nausea too. The headaches
                                    get
                                    > > > > really bad too. I haven't been able to drive for the same
                                    > amount
                                    > > > of
                                    > > > > time. Luckily, my dad has been able to take me to all my
                                    > doctor
                                    > > > > apointments. I live with my dad and stepmother and they
                                    aren't
                                    > > all
                                    > > > > that understanding about the not working and think that I am
                                    > > > > contageous to other people and that my immune system is
                                    down.
                                    > My
                                    > > > > step mother thinks that she is going to make me sick, give me
                                    a
                                    > > > cold
                                    > > > > or the flu or something. The doctors say that none of this
                                    is
                                    > > true
                                    > > > > though. She makes me feel unwelcome to stay there which is
                                    > > really
                                    > > > > stressing me out. The only treatment I have undergone is
                                    > > > > prednisone. I have a spinal tap and second MRI next week.
                                    I'm
                                    > > > > really scared about what is to come in the future with this
                                    > > > syndrome.
                                    > > > >
                                    > > > > How has your general life routine changed? Can life go back
                                    to
                                    > > > > normal when treatment starts? Did you go through a depressed
                                    > > > > stage? Any feedback and information that anyone can give
                                    would
                                    > > be
                                    > > > > greatly appreciated.
                                    > > > >
                                    > > > > Best regards,
                                    > > > > Christina (33 yo, in Virginia)
                                    > > > >
                                    > > >
                                    > > > Hey Christina... and welcome to the group ;-)
                                    > > >
                                    > > > Firstly try not to worry about the going crazy bit because
                                    thats
                                    > > not
                                    > > > really what happens, well thats not whats happened to my
                                    partner,
                                    > > its
                                    > > > more of an unawareness of what happening around you and
                                    conffusion
                                    > (
                                    > > > well thats how it is for Jen ) and the good news is that it
                                    does
                                    > > not
                                    > > > last for very long even if you do get it. Early treatment with
                                    > the
                                    > > > prendisone will give you a huge advantage, so that can only be
                                    a
                                    > > good
                                    > > > thing !!
                                    > > > If you are diagnosed with Susacs there is no doubt that it
                                    will
                                    > > > change your life... i know thats not nice to hear, but its the
                                    > > truth
                                    > > > and yes depression will also be a big problem.
                                    > > >
                                    > > > The good news is...... that one day you should beable to return
                                    > to
                                    > > a
                                    > > > near normal life, ( although it is highly unlikely your hearing
                                    > > will
                                    > > > improve ) the doctors say it usually runs its course over a
                                    two
                                    > to
                                    > > > five year period.
                                    > > >
                                    > > >
                                    > > > I think most of the other sufferers will agree that having a
                                    > > strong
                                    > > > mental attitude is the best way to say your going to beat
                                    > this !!!
                                    > > >
                                    > > >
                                    > > > I wish you all the luck in the world !!!
                                    > > >
                                    > > > Kind regards
                                    > > > Richard
                                    > > >
                                    > >
                                    > > Hey Richard-
                                    > >
                                    > > Thank you for the words of incouragement. Has Jen been able to
                                    > work
                                    > > at all through this whole thing? Either full or part time? When
                                    > she
                                    > > was diagnosed did you both do your homework to find out as much
                                    as
                                    > > you could about Susac's? Did she have IVIG treatment? If so,
                                    how
                                    > > did her body react to the treatment? I hope that these questions
                                    > > aren't too personal and if they are please let me know. I have
                                    so
                                    > > many questions and no one that has gone through it to ask.
                                    > >
                                    > > Thanks again,
                                    > > Christina
                                    > >Hi Christina,
                                    > Jens not worked a single day since being diagnosed, she still has
                                    > alot of problems with basic stuff like walking. Were not sure if
                                    the
                                    > IVIG worked as Jen seemed to come out of the confussion on her own,
                                    > but there were no side effects which was good.
                                    > The first thing i did when we she was diagnosed was to email Dr
                                    Susac
                                    > and he said that Jen would get better with time.
                                    > If you do a google search on the net for " myfox twin cities susac
                                    > syndrome " it will bring up a video interview of a girl over there
                                    in
                                    > the states with Susacs, well worth watching !!!
                                    > Below ive copied a study from March this year its a study of 100
                                    > sufferers.
                                    >
                                    > Any questions you have dont hesitate to ask and im sure if i carnt
                                    > answer them someone else in the group will
                                    > Warm regards
                                    > Richard
                                    > Long-Term Outcome in Susac Syndrome.
                                    >
                                    > Article
                                    >
                                    > Medicine. 86(2):93-102, March 2007.
                                    > Aubart-Cohen, Fleur MD; Klein, Isabelle MD, PhD; Alexandra, Jean-
                                    > Francois MD; Bodaghi, Bahram MD, PhD; Doan, Serge MD; Fardeau,
                                    > Christine MD; Lavallee, Philippa MD; Piette, Jean-Charles MD;
                                    Hoang,
                                    > Phuc Le MD, PhD; Papo, Thomas MD
                                    > Abstract:
                                    > Susac syndrome is characterized by the clinical triad of
                                    > encephalopathy, hearing loss, and retinal artery branch occlusions,
                                    > mostly in young women. To our knowledge, long-term outcome and
                                    impact
                                    > of pregnancy have not been specifically addressed. We report a
                                    series
                                    > of 9 patients (7 female, 2 male) followed at the same institution,
                                    > with special emphasis on clinical outcome including pregnancy and
                                    > long-term sequelae. Clinical, brain magnetic resonance imaging
                                    (MRI),
                                    > funduscopy, retinal angiography, and audiogram data were recorded
                                    > every 3-12 months. We also analyzed the 92 previously reported
                                    cases
                                    > of Susac syndrome.
                                    >
                                    > Mean follow-up was 6.4 years. Age at onset was 30.4 years. The
                                    first
                                    > symptom occurred between April and September in 7 of 9 patients in
                                    > the current study, and in 68% of all patients. The complete triad
                                    at
                                    > onset was clinically obvious in only 1 of 9 patients. Brain
                                    > involvement was heralded by headache and symptoms of
                                    encephalopathy.
                                    > Cerebrospinal fluid was abnormal in 5 patients showing pleocytosis
                                    > (mean, 24.6; range, 6-85 cells/mL) and elevated protein level
                                    (mean,
                                    > 210; range, 113-365 mg/dL). Over time, quantitative brain MRI
                                    > analysis showed that the number of lesions diminished and did not
                                    > parallel clinical flares, and MRI never normalized. At the end of
                                    > follow-up, no patient had severe impairment, and all but 1 returned
                                    > to work.
                                    >
                                    > Inner ear involvement was present at onset in 2 patients and
                                    occurred
                                    > in others with a mean delay of 11 months. Initially unilateral in
                                    3,
                                    > it became bilateral in all. Mean hearing loss was 34 dB (range, 15-
                                    70
                                    > dB). Hearing loss never improved, either spontaneously or under
                                    > treatment. The eye was involved at onset in 8 patients, and after 3
                                    > years in 1. All had multiple bilateral retinal artery branch
                                    > occlusions and/or dye leakage with hyperfluorescence of the
                                    arterial
                                    > wall on fluorescein angiography. Over time, angiography normalized
                                    in
                                    > 3 patients. In others, it was still abnormal at the end of follow-
                                    up
                                    > (range, 1.5-10 yr). On late findings, fluorescein leakage was more
                                    > frequent than true arterial occlusion. Eye involvement was mostly
                                    > asymptomatic, unilateral, peripheral, and resumed spontaneously to
                                    > remit in other sites over time.
                                    >
                                    > Corticosteroids were efficient to treat encephalopathy, with
                                    relapses
                                    > occurring when the dosage was tapered. Steroid treatment did not
                                    > improve hearing loss or prevent new retinal arteriolar occlusions.
                                    > Anticoagulation had a role in treating encephalopathy and retinal
                                    > arteriolar occlusions.
                                    >
                                    > Three patients had 4 pregnancies. Two pregnancies needed induced
                                    > abortion. One pregnancy was uneventful. One pregnancy was
                                    complicated
                                    > with Susac disease flare in the early postpartum period.
                                    >
                                    > In conclusion, at the end of follow-up, most patients had returned
                                    to
                                    > work and none had severe impairment. Pregnancy may affect the
                                    course
                                    > of Susac syndrome, with relapse of encephalopathy postpartum. Our
                                    > main finding was that the course of Susac syndrome is not self-
                                    > limited as previously thought, since isolated retinal arteriolar
                                    > involvement may occur as a very late manifestation.
                                    >
                                    > (C) 2007 Lippincott Williams & Wilkins, Inc.
                                    >
                                  • miss_va_31
                                    Hey Richard- Thank you for the great article and I will watch the video. I have a really hard time being on the computer for any length of time plus I have to
                                    Message 17 of 28 , Nov 5, 2007
                                    • 0 Attachment
                                      Hey Richard-

                                      Thank you for the great article and I will watch the video. I have a
                                      really hard time being on the computer for any length of time plus I
                                      have to come down stairs to use it. Where are you from, Richard?

                                      Thanks again-
                                      Christina

                                      Hey Renee-

                                      Where in PA are you? I will be visiting my mom who lives in PA,
                                      Lancaster County, for Christmas or maybe before. Are you close? If
                                      things don't work out with me staying with my dad then I will be
                                      moving in with my mom. I am single with no kids, unless you count my
                                      cat. It seems like it has been a really long road for people with
                                      susac's. Renee, have you been able to work? My dad and step mother
                                      just don't understand what it's like when you can't eat because you
                                      feel so sick to your stomach or you can't just jump up and go to the
                                      kitchen to make something to eat becasue the room is spinning so much
                                      and you just can't stand but for a few seconds at a time. I guess
                                      it's hard for them to understand because they have never really been
                                      sick and have never had something like this wrong with them.

                                      The journey so far has been frustrating. Something new pops up all
                                      the time and not being diagnosed until the MRI shows lesions or the
                                      brain thing kicks in full force. Has been emotional, which my dad
                                      doesn't understand.

                                      I'm glad to know that my life will me back to some sort or normal
                                      routine, someday.

                                      Thanks again for all the info.-
                                      Christina

                                      --- In susac_syndrome@yahoogroups.com, "gerbie15066"
                                      <gerbie15066@...> wrote:
                                      >
                                      > Hello my name is Renee from PA. I was diagnosed with susac in
                                      2001.
                                      > I currently have no hearing in my left ear. I have returned
                                      > completly to the life I had 6 years ago it was a long strugle but
                                      you
                                      > do get your life back. If you are willing to make a trip to PA I
                                      > could get you in contact with my neorologist who is excellent about
                                      > this disease.
                                      > I am not going to lye it is a hard strugle but you will get through
                                      > this just go for the treatments they do help you out alot. Your
                                      > imune system is down but it will get better. I am 34 years old I
                                      was
                                      > 28 when diagnosed. If you have any question PLEASE do not hesitate
                                      > to ask. We all from this group know what you are going through.
                                      >
                                      > Renee
                                      >
                                      >
                                      >
                                      > --- In susac_syndrome@yahoogroups.com, "superwelshish"
                                      > <rblackborow@> wrote:
                                      > >
                                      > > --- In susac_syndrome@yahoogroups.com, "miss_va_31" <miss_va_31@>
                                      > > wrote:
                                      > > >
                                      > > > --- In susac_syndrome@yahoogroups.com, "superwelshish"
                                      > > > <rblackborow@> wrote:
                                      > > > >
                                      > > > > --- In susac_syndrome@yahoogroups.com, "miss_va_31"
                                      > <miss_va_31@>
                                      > > > > wrote:
                                      > > > > >
                                      > > > > > --- In susac_syndrome@yahoogroups.com, "lisagrindey"
                                      > > > > > <lisagrindey@> wrote:
                                      > > > > > >
                                      > > > > > >
                                      > > > > > >
                                      > > > > > > Hello Melissa,
                                      > > > > > > How do you manage with all those diagnoses?? Do you work?
                                      > Do
                                      > > > you
                                      > > > > > have
                                      > > > > > > a family? I am impressed with everyone here and they
                                      > continue
                                      > > > on
                                      > > > > > with
                                      > > > > > > their fight. Very impressive. They have said my daughter
                                      is
                                      > > very
                                      > > > > > > classic case of Susac. Not too complicated yet. I hope,
                                      we
                                      > > will
                                      > > > > > see.
                                      > > > > > > Did you always have problems with your legs? What about
                                      > > > > > > encephalopathy? Can anyone elaborate of this for me. I
                                      > > > > understand
                                      > > > > > the
                                      > > > > > > definition I just want to know how you are able to
                                      > function?
                                      > > > > work?
                                      > > > > > and
                                      > > > > > > how was your family there for you that really helped you
                                      > the
                                      > > > > most.
                                      > > > > > I
                                      > > > > > > worry about that part. Does this disease come back worse
                                      > each
                                      > > > > > episode?
                                      > > > > > > Best Regards,
                                      > > > > > > Lisa
                                      > > > > > >
                                      > > > > >
                                      > > > > >
                                      > > > > > Hello-
                                      > > > > >
                                      > > > > > I have been said that I am a susac's syndrome candidate. I
                                      > > have
                                      > > > > > been trying to get all the information that I can and have
                                      > had
                                      > > > > > trouble because there just isn't that much out there. All
                                      of
                                      > > it
                                      > > > is
                                      > > > > > in medical terms. I have been diagnosed with the ears,
                                      eyes
                                      > > and
                                      > > > > now
                                      > > > > > they are waiting for me to go "crazy" before the doctors
                                      will
                                      > > > > > diagnose me with Susac's syndrome. This site is great,
                                      maybe
                                      > I
                                      > > > can
                                      > > > > > get my questions answered from people that are living with
                                      > this
                                      > > > > > disease. I haven't been able to work for 3 and half months
                                      > > now.
                                      > > > > > The vertigo gets so bad and the nausea too. The headaches
                                      > get
                                      > > > > > really bad too. I haven't been able to drive for the same
                                      > > amount
                                      > > > > of
                                      > > > > > time. Luckily, my dad has been able to take me to all my
                                      > > doctor
                                      > > > > > apointments. I live with my dad and stepmother and they
                                      > aren't
                                      > > > all
                                      > > > > > that understanding about the not working and think that I
                                      am
                                      > > > > > contageous to other people and that my immune system is
                                      > down.
                                      > > My
                                      > > > > > step mother thinks that she is going to make me sick, give
                                      me
                                      > a
                                      > > > > cold
                                      > > > > > or the flu or something. The doctors say that none of this
                                      > is
                                      > > > true
                                      > > > > > though. She makes me feel unwelcome to stay there which is
                                      > > > really
                                      > > > > > stressing me out. The only treatment I have undergone is
                                      > > > > > prednisone. I have a spinal tap and second MRI next week.
                                      > I'm
                                      > > > > > really scared about what is to come in the future with this
                                      > > > > syndrome.
                                      > > > > >
                                      > > > > > How has your general life routine changed? Can life go
                                      back
                                      > to
                                      > > > > > normal when treatment starts? Did you go through a
                                      depressed
                                      > > > > > stage? Any feedback and information that anyone can give
                                      > would
                                      > > > be
                                      > > > > > greatly appreciated.
                                      > > > > >
                                      > > > > > Best regards,
                                      > > > > > Christina (33 yo, in Virginia)
                                      > > > > >
                                      > > > >
                                      > > > > Hey Christina... and welcome to the group ;-)
                                      > > > >
                                      > > > > Firstly try not to worry about the going crazy bit because
                                      > thats
                                      > > > not
                                      > > > > really what happens, well thats not whats happened to my
                                      > partner,
                                      > > > its
                                      > > > > more of an unawareness of what happening around you and
                                      > conffusion
                                      > > (
                                      > > > > well thats how it is for Jen ) and the good news is that it
                                      > does
                                      > > > not
                                      > > > > last for very long even if you do get it. Early treatment
                                      with
                                      > > the
                                      > > > > prendisone will give you a huge advantage, so that can only
                                      be
                                      > a
                                      > > > good
                                      > > > > thing !!
                                      > > > > If you are diagnosed with Susacs there is no doubt that it
                                      > will
                                      > > > > change your life... i know thats not nice to hear, but its
                                      the
                                      > > > truth
                                      > > > > and yes depression will also be a big problem.
                                      > > > >
                                      > > > > The good news is...... that one day you should beable to
                                      return
                                      > > to
                                      > > > a
                                      > > > > near normal life, ( although it is highly unlikely your
                                      hearing
                                      > > > will
                                      > > > > improve ) the doctors say it usually runs its course over a
                                      > two
                                      > > to
                                      > > > > five year period.
                                      > > > >
                                      > > > >
                                      > > > > I think most of the other sufferers will agree that having a
                                      > > > strong
                                      > > > > mental attitude is the best way to say your going to beat
                                      > > this !!!
                                      > > > >
                                      > > > >
                                      > > > > I wish you all the luck in the world !!!
                                      > > > >
                                      > > > > Kind regards
                                      > > > > Richard
                                      > > > >
                                      > > >
                                      > > > Hey Richard-
                                      > > >
                                      > > > Thank you for the words of incouragement. Has Jen been able to
                                      > > work
                                      > > > at all through this whole thing? Either full or part time?
                                      When
                                      > > she
                                      > > > was diagnosed did you both do your homework to find out as much
                                      > as
                                      > > > you could about Susac's? Did she have IVIG treatment? If so,
                                      > how
                                      > > > did her body react to the treatment? I hope that these
                                      questions
                                      > > > aren't too personal and if they are please let me know. I have
                                      > so
                                      > > > many questions and no one that has gone through it to ask.
                                      > > >
                                      > > > Thanks again,
                                      > > > Christina
                                      > > >Hi Christina,
                                      > > Jens not worked a single day since being diagnosed, she still
                                      has
                                      > > alot of problems with basic stuff like walking. Were not sure if
                                      > the
                                      > > IVIG worked as Jen seemed to come out of the confussion on her
                                      own,
                                      > > but there were no side effects which was good.
                                      > > The first thing i did when we she was diagnosed was to email Dr
                                      > Susac
                                      > > and he said that Jen would get better with time.
                                      > > If you do a google search on the net for " myfox twin cities
                                      susac
                                      > > syndrome " it will bring up a video interview of a girl over
                                      there
                                      > in
                                      > > the states with Susacs, well worth watching !!!
                                      > > Below ive copied a study from March this year its a study of 100
                                      > > sufferers.
                                      > >
                                      > > Any questions you have dont hesitate to ask and im sure if i
                                      carnt
                                      > > answer them someone else in the group will
                                      > > Warm regards
                                      > > Richard
                                      > > Long-Term Outcome in Susac Syndrome.
                                      > >
                                      > > Article
                                      > >
                                      > > Medicine. 86(2):93-102, March 2007.
                                      > > Aubart-Cohen, Fleur MD; Klein, Isabelle MD, PhD; Alexandra, Jean-
                                      > > Francois MD; Bodaghi, Bahram MD, PhD; Doan, Serge MD; Fardeau,
                                      > > Christine MD; Lavallee, Philippa MD; Piette, Jean-Charles MD;
                                      > Hoang,
                                      > > Phuc Le MD, PhD; Papo, Thomas MD
                                      > > Abstract:
                                      > > Susac syndrome is characterized by the clinical triad of
                                      > > encephalopathy, hearing loss, and retinal artery branch
                                      occlusions,
                                      > > mostly in young women. To our knowledge, long-term outcome and
                                      > impact
                                      > > of pregnancy have not been specifically addressed. We report a
                                      > series
                                      > > of 9 patients (7 female, 2 male) followed at the same
                                      institution,
                                      > > with special emphasis on clinical outcome including pregnancy and
                                      > > long-term sequelae. Clinical, brain magnetic resonance imaging
                                      > (MRI),
                                      > > funduscopy, retinal angiography, and audiogram data were recorded
                                      > > every 3-12 months. We also analyzed the 92 previously reported
                                      > cases
                                      > > of Susac syndrome.
                                      > >
                                      > > Mean follow-up was 6.4 years. Age at onset was 30.4 years. The
                                      > first
                                      > > symptom occurred between April and September in 7 of 9 patients
                                      in
                                      > > the current study, and in 68% of all patients. The complete triad
                                      > at
                                      > > onset was clinically obvious in only 1 of 9 patients. Brain
                                      > > involvement was heralded by headache and symptoms of
                                      > encephalopathy.
                                      > > Cerebrospinal fluid was abnormal in 5 patients showing
                                      pleocytosis
                                      > > (mean, 24.6; range, 6-85 cells/mL) and elevated protein level
                                      > (mean,
                                      > > 210; range, 113-365 mg/dL). Over time, quantitative brain MRI
                                      > > analysis showed that the number of lesions diminished and did not
                                      > > parallel clinical flares, and MRI never normalized. At the end of
                                      > > follow-up, no patient had severe impairment, and all but 1
                                      returned
                                      > > to work.
                                      > >
                                      > > Inner ear involvement was present at onset in 2 patients and
                                      > occurred
                                      > > in others with a mean delay of 11 months. Initially unilateral in
                                      > 3,
                                      > > it became bilateral in all. Mean hearing loss was 34 dB (range,
                                      15-
                                      > 70
                                      > > dB). Hearing loss never improved, either spontaneously or under
                                      > > treatment. The eye was involved at onset in 8 patients, and after
                                      3
                                      > > years in 1. All had multiple bilateral retinal artery branch
                                      > > occlusions and/or dye leakage with hyperfluorescence of the
                                      > arterial
                                      > > wall on fluorescein angiography. Over time, angiography
                                      normalized
                                      > in
                                      > > 3 patients. In others, it was still abnormal at the end of follow-
                                      > up
                                      > > (range, 1.5-10 yr). On late findings, fluorescein leakage was
                                      more
                                      > > frequent than true arterial occlusion. Eye involvement was mostly
                                      > > asymptomatic, unilateral, peripheral, and resumed spontaneously
                                      to
                                      > > remit in other sites over time.
                                      > >
                                      > > Corticosteroids were efficient to treat encephalopathy, with
                                      > relapses
                                      > > occurring when the dosage was tapered. Steroid treatment did not
                                      > > improve hearing loss or prevent new retinal arteriolar
                                      occlusions.
                                      > > Anticoagulation had a role in treating encephalopathy and retinal
                                      > > arteriolar occlusions.
                                      > >
                                      > > Three patients had 4 pregnancies. Two pregnancies needed induced
                                      > > abortion. One pregnancy was uneventful. One pregnancy was
                                      > complicated
                                      > > with Susac disease flare in the early postpartum period.
                                      > >
                                      > > In conclusion, at the end of follow-up, most patients had
                                      returned
                                      > to
                                      > > work and none had severe impairment. Pregnancy may affect the
                                      > course
                                      > > of Susac syndrome, with relapse of encephalopathy postpartum. Our
                                      > > main finding was that the course of Susac syndrome is not self-
                                      > > limited as previously thought, since isolated retinal arteriolar
                                      > > involvement may occur as a very late manifestation.
                                      > >
                                      > > (C) 2007 Lippincott Williams & Wilkins, Inc.
                                      > >
                                      >
                                    • superwelshish
                                      ... Your very welcome, were in a lil village called Prestatyn ( pronouced *press tat in* lol ) in North Wales, UK. Maybe you can show your Dad the video too so
                                      Message 18 of 28 , Nov 5, 2007
                                      • 0 Attachment
                                        --- In susac_syndrome@yahoogroups.com, "miss_va_31" <miss_va_31@...>
                                        wrote:
                                        > Hi again Christina,
                                        Your very welcome, were in a lil village called Prestatyn (
                                        pronouced *press tat in* lol ) in North Wales, UK.

                                        Maybe you can show your Dad the video too so he can try and get some
                                        idea of what your going through.
                                        We`ll all keep our fingers crossed that your MRI scan comes back
                                        clear for you.

                                        Kind Regards
                                        Richard



                                        > Hey Richard-
                                        >
                                        > Thank you for the great article and I will watch the video. I have
                                        a
                                        > really hard time being on the computer for any length of time plus
                                        I
                                        > have to come down stairs to use it. Where are you from, Richard?
                                        >
                                        > Thanks again-
                                        > Christina
                                        >
                                        > Hey Renee-
                                        >
                                        > Where in PA are you? I will be visiting my mom who lives in PA,
                                        > Lancaster County, for Christmas or maybe before. Are you close?
                                        If
                                        > things don't work out with me staying with my dad then I will be
                                        > moving in with my mom. I am single with no kids, unless you count
                                        my
                                        > cat. It seems like it has been a really long road for people with
                                        > susac's. Renee, have you been able to work? My dad and step
                                        mother
                                        > just don't understand what it's like when you can't eat because you
                                        > feel so sick to your stomach or you can't just jump up and go to
                                        the
                                        > kitchen to make something to eat becasue the room is spinning so
                                        much
                                        > and you just can't stand but for a few seconds at a time. I guess
                                        > it's hard for them to understand because they have never really
                                        been
                                        > sick and have never had something like this wrong with them.
                                        >
                                        > The journey so far has been frustrating. Something new pops up all
                                        > the time and not being diagnosed until the MRI shows lesions or the
                                        > brain thing kicks in full force. Has been emotional, which my dad
                                        > doesn't understand.
                                        >
                                        > I'm glad to know that my life will me back to some sort or normal
                                        > routine, someday.
                                        >
                                        > Thanks again for all the info.-
                                        > Christina
                                        >
                                        > --- In susac_syndrome@yahoogroups.com, "gerbie15066"
                                        > <gerbie15066@> wrote:
                                        > >
                                        > > Hello my name is Renee from PA. I was diagnosed with susac in
                                        > 2001.
                                        > > I currently have no hearing in my left ear. I have returned
                                        > > completly to the life I had 6 years ago it was a long strugle but
                                        > you
                                        > > do get your life back. If you are willing to make a trip to PA I
                                        > > could get you in contact with my neorologist who is excellent
                                        about
                                        > > this disease.
                                        > > I am not going to lye it is a hard strugle but you will get
                                        through
                                        > > this just go for the treatments they do help you out alot. Your
                                        > > imune system is down but it will get better. I am 34 years old I
                                        > was
                                        > > 28 when diagnosed. If you have any question PLEASE do not
                                        hesitate
                                        > > to ask. We all from this group know what you are going through.
                                        > >
                                        > > Renee
                                        > >
                                        > >
                                        > >
                                        > > --- In susac_syndrome@yahoogroups.com, "superwelshish"
                                        > > <rblackborow@> wrote:
                                        > > >
                                        > > > --- In susac_syndrome@yahoogroups.com, "miss_va_31"
                                        <miss_va_31@>
                                        > > > wrote:
                                        > > > >
                                        > > > > --- In susac_syndrome@yahoogroups.com, "superwelshish"
                                        > > > > <rblackborow@> wrote:
                                        > > > > >
                                        > > > > > --- In susac_syndrome@yahoogroups.com, "miss_va_31"
                                        > > <miss_va_31@>
                                        > > > > > wrote:
                                        > > > > > >
                                        > > > > > > --- In susac_syndrome@yahoogroups.com, "lisagrindey"
                                        > > > > > > <lisagrindey@> wrote:
                                        > > > > > > >
                                        > > > > > > >
                                        > > > > > > >
                                        > > > > > > > Hello Melissa,
                                        > > > > > > > How do you manage with all those diagnoses?? Do you
                                        work?
                                        > > Do
                                        > > > > you
                                        > > > > > > have
                                        > > > > > > > a family? I am impressed with everyone here and they
                                        > > continue
                                        > > > > on
                                        > > > > > > with
                                        > > > > > > > their fight. Very impressive. They have said my
                                        daughter
                                        > is
                                        > > > very
                                        > > > > > > > classic case of Susac. Not too complicated yet. I hope,
                                        > we
                                        > > > will
                                        > > > > > > see.
                                        > > > > > > > Did you always have problems with your legs? What about
                                        > > > > > > > encephalopathy? Can anyone elaborate of this for me. I
                                        > > > > > understand
                                        > > > > > > the
                                        > > > > > > > definition I just want to know how you are able to
                                        > > function?
                                        > > > > > work?
                                        > > > > > > and
                                        > > > > > > > how was your family there for you that really helped
                                        you
                                        > > the
                                        > > > > > most.
                                        > > > > > > I
                                        > > > > > > > worry about that part. Does this disease come back
                                        worse
                                        > > each
                                        > > > > > > episode?
                                        > > > > > > > Best Regards,
                                        > > > > > > > Lisa
                                        > > > > > > >
                                        > > > > > >
                                        > > > > > >
                                        > > > > > > Hello-
                                        > > > > > >
                                        > > > > > > I have been said that I am a susac's syndrome candidate.
                                        I
                                        > > > have
                                        > > > > > > been trying to get all the information that I can and
                                        have
                                        > > had
                                        > > > > > > trouble because there just isn't that much out there.
                                        All
                                        > of
                                        > > > it
                                        > > > > is
                                        > > > > > > in medical terms. I have been diagnosed with the ears,
                                        > eyes
                                        > > > and
                                        > > > > > now
                                        > > > > > > they are waiting for me to go "crazy" before the doctors
                                        > will
                                        > > > > > > diagnose me with Susac's syndrome. This site is great,
                                        > maybe
                                        > > I
                                        > > > > can
                                        > > > > > > get my questions answered from people that are living
                                        with
                                        > > this
                                        > > > > > > disease. I haven't been able to work for 3 and half
                                        months
                                        > > > now.
                                        > > > > > > The vertigo gets so bad and the nausea too. The
                                        headaches
                                        > > get
                                        > > > > > > really bad too. I haven't been able to drive for the
                                        same
                                        > > > amount
                                        > > > > > of
                                        > > > > > > time. Luckily, my dad has been able to take me to all my
                                        > > > doctor
                                        > > > > > > apointments. I live with my dad and stepmother and they
                                        > > aren't
                                        > > > > all
                                        > > > > > > that understanding about the not working and think that I
                                        > am
                                        > > > > > > contageous to other people and that my immune system is
                                        > > down.
                                        > > > My
                                        > > > > > > step mother thinks that she is going to make me sick,
                                        give
                                        > me
                                        > > a
                                        > > > > > cold
                                        > > > > > > or the flu or something. The doctors say that none of
                                        this
                                        > > is
                                        > > > > true
                                        > > > > > > though. She makes me feel unwelcome to stay there which
                                        is
                                        > > > > really
                                        > > > > > > stressing me out. The only treatment I have undergone is
                                        > > > > > > prednisone. I have a spinal tap and second MRI next
                                        week.
                                        > > I'm
                                        > > > > > > really scared about what is to come in the future with
                                        this
                                        > > > > > syndrome.
                                        > > > > > >
                                        > > > > > > How has your general life routine changed? Can life go
                                        > back
                                        > > to
                                        > > > > > > normal when treatment starts? Did you go through a
                                        > depressed
                                        > > > > > > stage? Any feedback and information that anyone can give
                                        > > would
                                        > > > > be
                                        > > > > > > greatly appreciated.
                                        > > > > > >
                                        > > > > > > Best regards,
                                        > > > > > > Christina (33 yo, in Virginia)
                                        > > > > > >
                                        > > > > >
                                        > > > > > Hey Christina... and welcome to the group ;-)
                                        > > > > >
                                        > > > > > Firstly try not to worry about the going crazy bit because
                                        > > thats
                                        > > > > not
                                        > > > > > really what happens, well thats not whats happened to my
                                        > > partner,
                                        > > > > its
                                        > > > > > more of an unawareness of what happening around you and
                                        > > conffusion
                                        > > > (
                                        > > > > > well thats how it is for Jen ) and the good news is that it
                                        > > does
                                        > > > > not
                                        > > > > > last for very long even if you do get it. Early treatment
                                        > with
                                        > > > the
                                        > > > > > prendisone will give you a huge advantage, so that can only
                                        > be
                                        > > a
                                        > > > > good
                                        > > > > > thing !!
                                        > > > > > If you are diagnosed with Susacs there is no doubt that
                                        it
                                        > > will
                                        > > > > > change your life... i know thats not nice to hear, but its
                                        > the
                                        > > > > truth
                                        > > > > > and yes depression will also be a big problem.
                                        > > > > >
                                        > > > > > The good news is...... that one day you should beable to
                                        > return
                                        > > > to
                                        > > > > a
                                        > > > > > near normal life, ( although it is highly unlikely your
                                        > hearing
                                        > > > > will
                                        > > > > > improve ) the doctors say it usually runs its course over
                                        a
                                        > > two
                                        > > > to
                                        > > > > > five year period.
                                        > > > > >
                                        > > > > >
                                        > > > > > I think most of the other sufferers will agree that having
                                        a
                                        > > > > strong
                                        > > > > > mental attitude is the best way to say your going to beat
                                        > > > this !!!
                                        > > > > >
                                        > > > > >
                                        > > > > > I wish you all the luck in the world !!!
                                        > > > > >
                                        > > > > > Kind regards
                                        > > > > > Richard
                                        > > > > >
                                        > > > >
                                        > > > > Hey Richard-
                                        > > > >
                                        > > > > Thank you for the words of incouragement. Has Jen been able
                                        to
                                        > > > work
                                        > > > > at all through this whole thing? Either full or part time?
                                        > When
                                        > > > she
                                        > > > > was diagnosed did you both do your homework to find out as
                                        much
                                        > > as
                                        > > > > you could about Susac's? Did she have IVIG treatment? If
                                        so,
                                        > > how
                                        > > > > did her body react to the treatment? I hope that these
                                        > questions
                                        > > > > aren't too personal and if they are please let me know. I
                                        have
                                        > > so
                                        > > > > many questions and no one that has gone through it to ask.
                                        > > > >
                                        > > > > Thanks again,
                                        > > > > Christina
                                        > > > >Hi Christina,
                                        > > > Jens not worked a single day since being diagnosed, she still
                                        > has
                                        > > > alot of problems with basic stuff like walking. Were not sure
                                        if
                                        > > the
                                        > > > IVIG worked as Jen seemed to come out of the confussion on her
                                        > own,
                                        > > > but there were no side effects which was good.
                                        > > > The first thing i did when we she was diagnosed was to email Dr
                                        > > Susac
                                        > > > and he said that Jen would get better with time.
                                        > > > If you do a google search on the net for " myfox twin cities
                                        > susac
                                        > > > syndrome " it will bring up a video interview of a girl over
                                        > there
                                        > > in
                                        > > > the states with Susacs, well worth watching !!!
                                        > > > Below ive copied a study from March this year its a study of
                                        100
                                        > > > sufferers.
                                        > > >
                                        > > > Any questions you have dont hesitate to ask and im sure if i
                                        > carnt
                                        > > > answer them someone else in the group will
                                        > > > Warm regards
                                        > > > Richard
                                        > > > Long-Term Outcome in Susac Syndrome.
                                        > > >
                                        > > > Article
                                        > > >
                                        > > > Medicine. 86(2):93-102, March 2007.
                                        > > > Aubart-Cohen, Fleur MD; Klein, Isabelle MD, PhD; Alexandra,
                                        Jean-
                                        > > > Francois MD; Bodaghi, Bahram MD, PhD; Doan, Serge MD; Fardeau,
                                        > > > Christine MD; Lavallee, Philippa MD; Piette, Jean-Charles MD;
                                        > > Hoang,
                                        > > > Phuc Le MD, PhD; Papo, Thomas MD
                                        > > > Abstract:
                                        > > > Susac syndrome is characterized by the clinical triad of
                                        > > > encephalopathy, hearing loss, and retinal artery branch
                                        > occlusions,
                                        > > > mostly in young women. To our knowledge, long-term outcome and
                                        > > impact
                                        > > > of pregnancy have not been specifically addressed. We report a
                                        > > series
                                        > > > of 9 patients (7 female, 2 male) followed at the same
                                        > institution,
                                        > > > with special emphasis on clinical outcome including pregnancy
                                        and
                                        > > > long-term sequelae. Clinical, brain magnetic resonance imaging
                                        > > (MRI),
                                        > > > funduscopy, retinal angiography, and audiogram data were
                                        recorded
                                        > > > every 3-12 months. We also analyzed the 92 previously reported
                                        > > cases
                                        > > > of Susac syndrome.
                                        > > >
                                        > > > Mean follow-up was 6.4 years. Age at onset was 30.4 years. The
                                        > > first
                                        > > > symptom occurred between April and September in 7 of 9 patients
                                        > in
                                        > > > the current study, and in 68% of all patients. The complete
                                        triad
                                        > > at
                                        > > > onset was clinically obvious in only 1 of 9 patients. Brain
                                        > > > involvement was heralded by headache and symptoms of
                                        > > encephalopathy.
                                        > > > Cerebrospinal fluid was abnormal in 5 patients showing
                                        > pleocytosis
                                        > > > (mean, 24.6; range, 6-85 cells/mL) and elevated protein level
                                        > > (mean,
                                        > > > 210; range, 113-365 mg/dL). Over time, quantitative brain MRI
                                        > > > analysis showed that the number of lesions diminished and did
                                        not
                                        > > > parallel clinical flares, and MRI never normalized. At the end
                                        of
                                        > > > follow-up, no patient had severe impairment, and all but 1
                                        > returned
                                        > > > to work.
                                        > > >
                                        > > > Inner ear involvement was present at onset in 2 patients and
                                        > > occurred
                                        > > > in others with a mean delay of 11 months. Initially unilateral
                                        in
                                        > > 3,
                                        > > > it became bilateral in all. Mean hearing loss was 34 dB (range,
                                        > 15-
                                        > > 70
                                        > > > dB). Hearing loss never improved, either spontaneously or under
                                        > > > treatment. The eye was involved at onset in 8 patients, and
                                        after
                                        > 3
                                        > > > years in 1. All had multiple bilateral retinal artery branch
                                        > > > occlusions and/or dye leakage with hyperfluorescence of the
                                        > > arterial
                                        > > > wall on fluorescein angiography. Over time, angiography
                                        > normalized
                                        > > in
                                        > > > 3 patients. In others, it was still abnormal at the end of
                                        follow-
                                        > > up
                                        > > > (range, 1.5-10 yr). On late findings, fluorescein leakage was
                                        > more
                                        > > > frequent than true arterial occlusion. Eye involvement was
                                        mostly
                                        > > > asymptomatic, unilateral, peripheral, and resumed spontaneously
                                        > to
                                        > > > remit in other sites over time.
                                        > > >
                                        > > > Corticosteroids were efficient to treat encephalopathy, with
                                        > > relapses
                                        > > > occurring when the dosage was tapered. Steroid treatment did
                                        not
                                        > > > improve hearing loss or prevent new retinal arteriolar
                                        > occlusions.
                                        > > > Anticoagulation had a role in treating encephalopathy and
                                        retinal
                                        > > > arteriolar occlusions.
                                        > > >
                                        > > > Three patients had 4 pregnancies. Two pregnancies needed
                                        induced
                                        > > > abortion. One pregnancy was uneventful. One pregnancy was
                                        > > complicated
                                        > > > with Susac disease flare in the early postpartum period.
                                        > > >
                                        > > > In conclusion, at the end of follow-up, most patients had
                                        > returned
                                        > > to
                                        > > > work and none had severe impairment. Pregnancy may affect the
                                        > > course
                                        > > > of Susac syndrome, with relapse of encephalopathy postpartum.
                                        Our
                                        > > > main finding was that the course of Susac syndrome is not self-
                                        > > > limited as previously thought, since isolated retinal
                                        arteriolar
                                        > > > involvement may occur as a very late manifestation.
                                        > > >
                                        > > > (C) 2007 Lippincott Williams & Wilkins, Inc.
                                        > > >
                                        > >
                                        >
                                      • Renee Gerber
                                        Christina, I live in the Pittsburgh area. Trust me it is a struggle but there is light at the end and you will return to a somewhat normal life. I am a
                                        Message 19 of 28 , Nov 6, 2007
                                        • 0 Attachment
                                          Christina,
                                           
                                          I live in the Pittsburgh area.  Trust me it is a struggle but there is light at the end and you will return to a somewhat normal life.  I am a single person with a child who is 10 now.  My parents really helped me through this whole thing.  They are very supportive and my child also she is my fighting reason to get better.  Ask me any question and I will answer them the best I can.

                                          miss_va_31 <miss_va_31@...> wrote:
                                          Hey Richard-

                                          Thank you for the great article and I will watch the video. I have a
                                          really hard time being on the computer for any length of time plus I
                                          have to come down stairs to use it. Where are you from, Richard?

                                          Thanks again-
                                          Christina

                                          Hey Renee-

                                          Where in PA are you? I will be visiting my mom who lives in PA,
                                          Lancaster County, for Christmas or maybe before. Are you close? If
                                          things don't work out with me staying with my dad then I will be
                                          moving in with my mom. I am single with no kids, unless you count my
                                          cat. It seems like it has been a really long road for people with
                                          susac's. Renee, have you been able to work? My dad and step mother
                                          just don't understand what it's like when you can't eat because you
                                          feel so sick to your stomach or you can't just jump up and go to the
                                          kitchen to make something to eat becasue the room is spinning so much
                                          and you just can't stand but for a few seconds at a time. I guess
                                          it's hard for them to understand because they have never really been
                                          sick and have never had something like this wrong with them.

                                          The journey so far has been frustrating. Something new pops up all
                                          the time and not being diagnosed until the MRI shows lesions or the
                                          brain thing kicks in full force. Has been emotional, which my dad
                                          doesn't understand.

                                          I'm glad to know that my life will me back to some sort or normal
                                          routine, someday.

                                          Thanks again for all the info.-
                                          Christina

                                          --- In susac_syndrome@ yahoogroups. com, "gerbie15066"
                                          <gerbie15066@ ...> wrote:
                                          >
                                          > Hello my name is Renee from PA. I was diagnosed with susac in
                                          2001.
                                          > I currently have no hearing in my left ear. I have returned
                                          > completly to the life I had 6 years ago it was a long strugle but
                                          you
                                          > do get your life back. If you are willing to make a trip to PA I
                                          > could get you in contact with my neorologist who is excellent about
                                          > this disease.
                                          > I am not going to lye it is a hard strugle but you will get through
                                          > this just go for the treatments they do help you out alot. Your
                                          > imune system is down but it will get better. I am 34 years old I
                                          was
                                          > 28 when diagnosed. If you have any question PLEASE do not hesitate
                                          > to ask. We all from this group know what you are going through.
                                          >
                                          > Renee
                                          >
                                          >
                                          >
                                          > --- In susac_syndrome@ yahoogroups. com, "superwelshish"
                                          > <rblackborow@ > wrote:
                                          > >
                                          > > --- In susac_syndrome@ yahoogroups. com, "miss_va_31" <miss_va_31@ >
                                          > > wrote:
                                          > > >
                                          > > > --- In susac_syndrome@ yahoogroups. com, "superwelshish"
                                          > > > <rblackborow@ > wrote:
                                          > > > >
                                          > > > > --- In susac_syndrome@ yahoogroups. com, "miss_va_31"
                                          > <miss_va_31@ >
                                          > > > > wrote:
                                          > > > > >
                                          > > > > > --- In susac_syndrome@ yahoogroups. com, "lisagrindey"
                                          > > > > > <lisagrindey@ > wrote:
                                          > > > > > >
                                          > > > > > >
                                          > > > > > >
                                          > > > > > > Hello Melissa,
                                          > > > > > > How do you manage with all those diagnoses?? Do you work?
                                          > Do
                                          > > > you
                                          > > > > > have
                                          > > > > > > a family? I am impressed with everyone here and they
                                          > continue
                                          > > > on
                                          > > > > > with
                                          > > > > > > their fight. Very impressive. They have said my daughter
                                          is
                                          > > very
                                          > > > > > > classic case of Susac. Not too complicated yet. I hope,
                                          we
                                          > > will
                                          > > > > > see.
                                          > > > > > > Did you always have problems with your legs? What about
                                          > > > > > > encephalopathy? Can anyone elaborate of this for me. I
                                          > > > > understand
                                          > > > > > the
                                          > > > > > > definition I just want to know how you are able to
                                          > function?
                                          > > > > work?
                                          > > > > > and
                                          > > > > > > how was your family there for you that really helped you
                                          > the
                                          > > > > most.
                                          > > > > > I
                                          > > > > > > worry about that part. Does this disease come back worse
                                          > each
                                          > > > > > episode?
                                          > > > > > > Best Regards,
                                          > > > > > > Lisa
                                          > > > > > >
                                          > > > > >
                                          > > > > >
                                          > > > > > Hello-
                                          > > > > >
                                          > > > > > I have been said that I am a susac's syndrome candidate. I
                                          > > have
                                          > > > > > been trying to get all the information that I can and have
                                          > had
                                          > > > > > trouble because there just isn't that much out there. All
                                          of
                                          > > it
                                          > > > is
                                          > > > > > in medical terms. I have been diagnosed with the ears,
                                          eyes
                                          > > and
                                          > > > > now
                                          > > > > > they are waiting for me to go "crazy" before the doctors
                                          will
                                          > > > > > diagnose me with Susac's syndrome. This site is great,
                                          maybe
                                          > I
                                          > > > can
                                          > > > > > get my questions answered from people that are living with
                                          > this
                                          > > > > > disease. I haven't been able to work for 3 and half months
                                          > > now.
                                          > > > > > The vertigo gets so bad and the nausea too. The headaches
                                          > get
                                          > > > > > really bad too. I haven't been able to drive for the same
                                          > > amount
                                          > > > > of
                                          > > > > > time. Luckily, my dad has been able to take me to all my
                                          > > doctor
                                          > > > > > apointments. I live with my dad and stepmother and they
                                          > aren't
                                          > > > all
                                          > > > > > that understanding about the not working and think that I
                                          am
                                          > > > > > contageous to other people and that my immune system is
                                          > down.
                                          > > My
                                          > > > > > step mother thinks that she is going to make me sick, give
                                          me
                                          > a
                                          > > > > cold
                                          > > > > > or the flu or something. The doctors say that none of this
                                          > is
                                          > > > true
                                          > > > > > though. She makes me feel unwelcome to stay there which is
                                          > > > really
                                          > > > > > stressing me out. The only treatment I have undergone is
                                          > > > > > prednisone. I have a spinal tap and second MRI next week.
                                          > I'm
                                          > > > > > really scared about what is to come in the future with this
                                          > > > > syndrome.
                                          > > > > >
                                          > > > > > How has your general life routine changed? Can life go
                                          back
                                          > to
                                          > > > > > normal when treatment starts? Did you go through a
                                          depressed
                                          > > > > > stage? Any feedback and information that anyone can give
                                          > would
                                          > > > be
                                          > > > > > greatly appreciated.
                                          > > > > >
                                          > > > > > Best regards,
                                          > > > > > Christina (33 yo, in Virginia)
                                          > > > > >
                                          > > > >
                                          > > > > Hey Christina... and welcome to the group ;-)
                                          > > > >
                                          > > > > Firstly try not to worry about the going crazy bit because
                                          > thats
                                          > > > not
                                          > > > > really what happens, well thats not whats happened to my
                                          > partner,
                                          > > > its
                                          > > > > more of an unawareness of what happening around you and
                                          > conffusion
                                          > > (
                                          > > > > well thats how it is for Jen ) and the good news is that it
                                          > does
                                          > > > not
                                          > > > > last for very long even if you do get it. Early treatment
                                          with
                                          > > the
                                          > > > > prendisone will give you a huge advantage, so that can only
                                          be
                                          > a
                                          > > > good
                                          > > > > thing !!
                                          > > > > If you are diagnosed with Susacs there is no doubt that it
                                          > will
                                          > > > > change your life... i know thats not nice to hear, but its
                                          the
                                          > > > truth
                                          > > > > and yes depression will also be a big problem.
                                          > > > >
                                          > > > > The good news is...... that one day you should beable to
                                          return
                                          > > to
                                          > > > a
                                          > > > > near normal life, ( although it is highly unlikely your
                                          hearing
                                          > > > will
                                          > > > > improve ) the doctors say it usually runs its course over a
                                          > two
                                          > > to
                                          > > > > five year period.
                                          > > > >
                                          > > > >
                                          > > > > I think most of the other sufferers will agree that having a
                                          > > > strong
                                          > > > > mental attitude is the best way to say your going to beat
                                          > > this !!!
                                          > > > >
                                          > > > >
                                          > > > > I wish you all the luck in the world !!!
                                          > > > >
                                          > > > > Kind regards
                                          > > > > Richard
                                          > > > >
                                          > > >
                                          > > > Hey Richard-
                                          > > >
                                          > > > Thank you for the words of incouragement. Has Jen been able to
                                          > > work
                                          > > > at all through this whole thing? Either full or part time?
                                          When
                                          > > she
                                          > > > was diagnosed did you both do your homework to find out as much
                                          > as
                                          > > > you could about Susac's? Did she have IVIG treatment? If so,
                                          > how
                                          > > > did her body react to the treatment? I hope that these
                                          questions
                                          > > > aren't too personal and if they are please let me know. I have
                                          > so
                                          > > > many questions and no one that has gone through it to ask.
                                          > > >
                                          > > > Thanks again,
                                          > > > Christina
                                          > > >Hi Christina,
                                          > > Jens not worked a single day since being diagnosed, she still
                                          has
                                          > > alot of problems with basic stuff like walking. Were not sure if
                                          > the
                                          > > IVIG worked as Jen seemed to come out of the confussion on her
                                          own,
                                          > > but there were no side effects which was good.
                                          > > The first thing i did when we she was diagnosed was to email Dr
                                          > Susac
                                          > > and he said that Jen would get better with time.
                                          > > If you do a google search on the net for " myfox twin cities
                                          susac
                                          > > syndrome " it will bring up a video interview of a girl over
                                          there
                                          > in
                                          > > the states with Susacs, well worth watching !!!
                                          > > Below ive copied a study from March this year its a study of 100
                                          > > sufferers.
                                          > >
                                          > > Any questions you have dont hesitate to ask and im sure if i
                                          carnt
                                          > > answer them someone else in the group will
                                          > > Warm regards
                                          > > Richard
                                          > > Long-Term Outcome in Susac Syndrome.
                                          > >
                                          > > Article
                                          > >
                                          > > Medicine. 86(2):93-102, March 2007.
                                          > > Aubart-Cohen, Fleur MD; Klein, Isabelle MD, PhD; Alexandra, Jean-
                                          > > Francois MD; Bodaghi, Bahram MD, PhD; Doan, Serge MD; Fardeau,
                                          > > Christine MD; Lavallee, Philippa MD; Piette, Jean-Charles MD;
                                          > Hoang,
                                          > > Phuc Le MD, PhD; Papo, Thomas MD
                                          > > Abstract:
                                          > > Susac syndrome is characterized by the clinical triad of
                                          > > encephalopathy, hearing loss, and retinal artery branch
                                          occlusions,
                                          > > mostly in young women. To our knowledge, long-term outcome and
                                          > impact
                                          > > of pregnancy have not been specifically addressed. We report a
                                          > series
                                          > > of 9 patients (7 female, 2 male) followed at the same
                                          institution,
                                          > > with special emphasis on clinical outcome including pregnancy and
                                          > > long-term sequelae. Clinical, brain magnetic resonance imaging
                                          > (MRI),
                                          > > funduscopy, retinal angiography, and audiogram data were recorded
                                          > > every 3-12 months. We also analyzed the 92 previously reported
                                          > cases
                                          > > of Susac syndrome.
                                          > >
                                          > > Mean follow-up was 6.4 years. Age at onset was 30.4 years. The
                                          > first
                                          > > symptom occurred between April and September in 7 of 9 patients
                                          in
                                          > > the current study, and in 68% of all patients. The complete triad
                                          > at
                                          > > onset was clinically obvious in only 1 of 9 patients. Brain
                                          > > involvement was heralded by headache and symptoms of
                                          > encephalopathy.
                                          > > Cerebrospinal fluid was abnormal in 5 patients showing
                                          pleocytosis
                                          > > (mean, 24.6; range, 6-85 cells/mL) and elevated protein level
                                          > (mean,
                                          > > 210; range, 113-365 mg/dL). Over time, quantitative brain MRI
                                          > > analysis showed that the number of lesions diminished and did not
                                          > > parallel clinical flares, and MRI never normalized. At the end of
                                          > > follow-up, no patient had severe impairment, and all but 1
                                          returned
                                          > > to work.
                                          > >
                                          > > Inner ear involvement was present at onset in 2 patients and
                                          > occurred
                                          > > in others with a mean delay of 11 months. Initially unilateral in
                                          > 3,
                                          > > it became bilateral in all. Mean hearing loss was 34 dB (range,
                                          15-
                                          > 70
                                          > > dB). Hearing loss never improved, either spontaneously or under
                                          > > treatment. The eye was involved at onset in 8 patients, and after
                                          3
                                          > > years in 1. All had multiple bilateral retinal artery branch
                                          > > occlusions and/or dye leakage with hyperfluorescence of the
                                          > arterial
                                          > > wall on fluorescein angiography. Over time, angiography
                                          normalized
                                          > in
                                          > > 3 patients. In others, it was still abnormal at the end of follow-
                                          > up
                                          > > (range, 1.5-10 yr). On late findings, fluorescein leakage was
                                          more
                                          > > frequent than true arterial occlusion. Eye involvement was mostly
                                          > > asymptomatic, unilateral, peripheral, and resumed spontaneously
                                          to
                                          > > remit in other sites over time.
                                          > >
                                          > > Corticosteroids were efficient to treat encephalopathy, with
                                          > relapses
                                          > > occurring when the dosage was tapered. Steroid treatment did not
                                          > > improve hearing loss or prevent new retinal arteriolar
                                          occlusions.
                                          > > Anticoagulation had a role in treating encephalopathy and retinal
                                          > > arteriolar occlusions.
                                          > >
                                          > > Three patients had 4 pregnancies. Two pregnancies needed induced
                                          > > abortion. One pregnancy was uneventful. One pregnancy was
                                          > complicated
                                          > > with Susac disease flare in the early postpartum period.
                                          > >
                                          > > In conclusion, at the end of follow-up, most patients had
                                          returned
                                          > to
                                          > > work and none had severe impairment. Pregnancy may affect the
                                          > course
                                          > > of Susac syndrome, with relapse of encephalopathy postpartum. Our
                                          > > main finding was that the course of Susac syndrome is not self-
                                          > > limited as previously thought, since isolated retinal arteriolar
                                          > > involvement may occur as a very late manifestation.
                                          > >
                                          > > (C) 2007 Lippincott Williams & Wilkins, Inc.
                                          > >
                                          >


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                                        • mikabest@smartchat.net.au
                                          ... From: miss_va_31 miss_va_31@yahoo.com Date: Sun, 04 Nov 2007 18:45:58 -0000 To: susac_syndrome@yahoogroups.com Subject: [susac_syndrome] Re: New Patient of
                                          Message 20 of 28 , Nov 6, 2007
                                          • 0 Attachment
                                            Original Message:
                                            -----------------
                                            From: miss_va_31 miss_va_31@...
                                            Date: Sun, 04 Nov 2007 18:45:58 -0000
                                            To: susac_syndrome@yahoogroups.com
                                            Subject: [susac_syndrome] Re: New Patient of Susac Syndrome.....


                                            --- In susac_syndrome@yahoogroups.com, "superwelshish"
                                            <rblackborow@...> wrote:
                                            >
                                            > --- In susac_syndrome@yahoogroups.com, "miss_va_31" <miss_va_31@>
                                            > wrote:
                                            > >
                                            > > --- In susac_syndrome@yahoogroups.com, "lisagrindey"
                                            > > <lisagrindey@> wrote:
                                            > > >
                                            > > >
                                            > > >
                                            > > > Hello Melissa,
                                            > > > How do you manage with all those diagnoses?? Do you work? Do
                                            you
                                            > > have
                                            > > > a family? I am impressed with everyone here and they continue
                                            on
                                            > > with
                                            > > > their fight. Very impressive. They have said my daughter is very
                                            > > > classic case of Susac. Not too complicated yet. I hope, we will
                                            > > see.
                                            > > > Did you always have problems with your legs? What about
                                            > > > encephalopathy? Can anyone elaborate of this for me. I
                                            > understand
                                            > > the
                                            > > > definition I just want to know how you are able to function?
                                            > work?
                                            > > and
                                            > > > how was your family there for you that really helped you the
                                            > most.
                                            > > I
                                            > > > worry about that part. Does this disease come back worse each
                                            > > episode?
                                            > > > Best Regards,
                                            > > > Lisa
                                            > > >
                                            > >
                                            > >
                                            > > Hello-
                                            > >
                                            > > I have been said that I am a susac's syndrome candidate. I have
                                            > > been trying to get all the information that I can and have had
                                            > > trouble because there just isn't that much out there. All of it
                                            is
                                            > > in medical terms. I have been diagnosed with the ears, eyes and
                                            > now
                                            > > they are waiting for me to go "crazy" before the doctors will
                                            > > diagnose me with Susac's syndrome. This site is great, maybe I
                                            can
                                            > > get my questions answered from people that are living with this
                                            > > disease. I haven't been able to work for 3 and half months now.
                                            > > The vertigo gets so bad and the nausea too. The headaches get
                                            > > really bad too. I haven't been able to drive for the same amount
                                            > of
                                            > > time. Luckily, my dad has been able to take me to all my doctor
                                            > > apointments. I live with my dad and stepmother and they aren't
                                            all
                                            > > that understanding about the not working and think that I am
                                            > > contageous to other people and that my immune system is down. My
                                            > > step mother thinks that she is going to make me sick, give me a
                                            > cold
                                            > > or the flu or something. The doctors say that none of this is
                                            true
                                            > > though. She makes me feel unwelcome to stay there which is
                                            really
                                            > > stressing me out. The only treatment I have undergone is
                                            > > prednisone. I have a spinal tap and second MRI next week. I'm
                                            > > really scared about what is to come in the future with this
                                            > syndrome.
                                            > >
                                            > > How has your general life routine changed? Can life go back to
                                            > > normal when treatment starts? Did you go through a depressed
                                            > > stage? Any feedback and information that anyone can give would
                                            be
                                            > > greatly appreciated.
                                            > >
                                            > > Best regards,
                                            > > Christina (33 yo, in Virginia)
                                            > >
                                            >
                                            > Hey Christina... and welcome to the group ;-)
                                            >
                                            > Firstly try not to worry about the going crazy bit because thats
                                            not
                                            > really what happens, well thats not whats happened to my partner,
                                            its
                                            > more of an unawareness of what happening around you and conffusion(
                                            > well thats how it is for Jen ) and the good news is that it does
                                            not
                                            > last for very long even if you do get it. Early treatment with the
                                            > prendisone will give you a huge advantage, so that can only be a
                                            good
                                            > thing !!
                                            > If you are diagnosed with Susacs there is no doubt that it will
                                            > change your life... i know thats not nice to hear, but its the
                                            truth
                                            > and yes depression will also be a big problem.
                                            >
                                            > The good news is...... that one day you should beable to return to
                                            a
                                            > near normal life, ( although it is highly unlikely your hearing
                                            will
                                            > improve ) the doctors say it usually runs its course over a two to
                                            > five year period.
                                            >
                                            >
                                            > I think most of the other sufferers will agree that having a
                                            strong
                                            > mental attitude is the best way to say your going to beat this !!!
                                            >
                                            >
                                            > I wish you all the luck in the world !!!
                                            >
                                            > Kind regards
                                            > Richard
                                            >

                                            Hey Richard-

                                            Thank you for the words of incouragement. Has Jen been able to work
                                            at all through this whole thing? Either full or part time? When she
                                            was diagnosed did you both do your homework to find out as much as
                                            you could about Susac's? Did she have IVIG treatment? If so, how
                                            did her body react to the treatment? I hope that these questions
                                            aren't too personal and if they are please let me know. I have so
                                            many questions and no one that has gone through it to ask.

                                            Thanks again,
                                            Christina

                                            Hi Christina:
                                            Just checked my emails and saw your questions. I hope this will help you as
                                            we have all been through similar experences. Like Richard said you probably
                                            not get much of your hearing back, but some patients have had cocheal
                                            implants. I just manager as it is worst in my left ear than in my right.My
                                            first episode was 6 years ago and I am still battling, I have a great
                                            husband and family support. My major problems are eye sight lose and
                                            depression. The depression is managed with meds and counselling, the eye
                                            sight lose is mainly perriforal and when I lose some more sight I contact
                                            my neurlogist and am put into hospital immediately and put on 500mg iv
                                            methylprednisolone for 5 days. Since June I have been on cyclosporin to
                                            suppress my immun-system and trying to reduce my oral steriod. I have also
                                            try 2 6month courses of ivig that held everything at bay for 6months or so
                                            and this year also had 4 weeks 3 times a week of plasmaphorisis. I think it
                                            is worth trying everthing to save your sight. I know my spelling is not the
                                            best but it wasn't good before this horrible illness. Life does get better
                                            and easier so hang in there and chin up you are not on this path alone.
                                            Karen Cooper
                                            Perth, Western Australia

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                                          • ralphneidert
                                            Hello Christina, My wife of 28 yrs recently passed away from complications caused by Susac s. She was 51. We live in Maryland. My wife had hearing loss,
                                            Message 21 of 28 , Feb 5, 2008
                                            • 0 Attachment
                                              Hello Christina,
                                              My wife of 28 yrs recently passed away from complications caused by
                                              Susac's. She was 51. We live in Maryland. My wife had hearing loss,
                                              retinal occlusions and encephalopathy. A blood clot caused from being
                                              immobile due to the encephalopathy is what caused her death. If there
                                              is anything that I can do to help you please let me know. I want to
                                              start a support group for patients and family, but don't know were to
                                              start.
                                              --- In susac_syndrome@yahoogroups.com, "miss_va_31" <miss_va_31@...>
                                              wrote:
                                              >
                                              > --- In susac_syndrome@yahoogroups.com, "lisagrindey"
                                              > <lisagrindey@> wrote:
                                              > >
                                              > >
                                              > >
                                              > > Hello Melissa,
                                              > > How do you manage with all those diagnoses?? Do you work? Do you
                                              > have
                                              > > a family? I am impressed with everyone here and they continue on
                                              > with
                                              > > their fight. Very impressive. They have said my daughter is very
                                              > > classic case of Susac. Not too complicated yet. I hope, we will
                                              > see.
                                              > > Did you always have problems with your legs? What about
                                              > > encephalopathy? Can anyone elaborate of this for me. I understand
                                              > the
                                              > > definition I just want to know how you are able to function? work?
                                              > and
                                              > > how was your family there for you that really helped you the most.
                                              > I
                                              > > worry about that part. Does this disease come back worse each
                                              > episode?
                                              > > Best Regards,
                                              > > Lisa
                                              > >
                                              >
                                              >
                                              > Hello-
                                              >
                                              > I have been said that I am a susac's syndrome candidate. I have
                                              > been trying to get all the information that I can and have had
                                              > trouble because there just isn't that much out there. All of it is
                                              > in medical terms. I have been diagnosed with the ears, eyes and now
                                              > they are waiting for me to go "crazy" before the doctors will
                                              > diagnose me with Susac's syndrome. This site is great, maybe I can
                                              > get my questions answered from people that are living with this
                                              > disease. I haven't been able to work for 3 and half months now.
                                              > The vertigo gets so bad and the nausea too. The headaches get
                                              > really bad too. I haven't been able to drive for the same amount of
                                              > time. Luckily, my dad has been able to take me to all my doctor
                                              > apointments. I live with my dad and stepmother and they aren't all
                                              > that understanding about the not working and think that I am
                                              > contageous to other people and that my immune system is down. My
                                              > step mother thinks that she is going to make me sick, give me a cold
                                              > or the flu or something. The doctors say that none of this is true
                                              > though. She makes me feel unwelcome to stay there which is really
                                              > stressing me out. The only treatment I have undergone is
                                              > prednisone. I have a spinal tap and second MRI next week. I'm
                                              > really scared about what is to come in the future with this syndrome.
                                              >
                                              > How has your general life routine changed? Can life go back to
                                              > normal when treatment starts? Did you go through a depressed
                                              > stage? Any feedback and information that anyone can give would be
                                              > greatly appreciated.
                                              >
                                              > Best regards,
                                              > Christina (33 yo, in Virginia)
                                              >
                                            • miss_va_31
                                              Hello Ralph- I am really sorry to hear about your wife. That is a tough one!! I m here if you need to talk. Mine isn t that bad. Still no encephalopathy. I
                                              Message 22 of 28 , Feb 6, 2008
                                              • 0 Attachment
                                                Hello Ralph-

                                                I am really sorry to hear about your wife. That is a tough one!!
                                                I'm here if you need to talk. Mine isn't that bad. Still no
                                                encephalopathy. I have had one IVIG treatment, that didn't go to
                                                well. My veins didn't cooperate very well. But, I did make it
                                                through. Still not really working. I have had my neuropsych test,
                                                no results yet. I see my Neurologist today, though. I just started
                                                on an antidepressant, just makes me jittery and my mind race.
                                                Anyway, let me know if I can help in anyway with the support group.
                                                I'm not sure where to start either. I don't know anyone else with
                                                susac's syndrome. Best of luck!

                                                Christina

                                                --- In susac_syndrome@yahoogroups.com, "ralphneidert"
                                                <ralphneidert@...> wrote:
                                                >
                                                > Hello Christina,
                                                > My wife of 28 yrs recently passed away from complications caused by
                                                > Susac's. She was 51. We live in Maryland. My wife had hearing loss,
                                                > retinal occlusions and encephalopathy. A blood clot caused from
                                                being
                                                > immobile due to the encephalopathy is what caused her death. If
                                                there
                                                > is anything that I can do to help you please let me know. I want to
                                                > start a support group for patients and family, but don't know were
                                                to
                                                > start.
                                                > --- In susac_syndrome@yahoogroups.com, "miss_va_31" <miss_va_31@>
                                                > wrote:
                                                > >
                                                > > --- In susac_syndrome@yahoogroups.com, "lisagrindey"
                                                > > <lisagrindey@> wrote:
                                                > > >
                                                > > >
                                                > > >
                                                > > > Hello Melissa,
                                                > > > How do you manage with all those diagnoses?? Do you work? Do
                                                you
                                                > > have
                                                > > > a family? I am impressed with everyone here and they continue
                                                on
                                                > > with
                                                > > > their fight. Very impressive. They have said my daughter is very
                                                > > > classic case of Susac. Not too complicated yet. I hope, we will
                                                > > see.
                                                > > > Did you always have problems with your legs? What about
                                                > > > encephalopathy? Can anyone elaborate of this for me. I
                                                understand
                                                > > the
                                                > > > definition I just want to know how you are able to function?
                                                work?
                                                > > and
                                                > > > how was your family there for you that really helped you the
                                                most.
                                                > > I
                                                > > > worry about that part. Does this disease come back worse each
                                                > > episode?
                                                > > > Best Regards,
                                                > > > Lisa
                                                > > >
                                                > >
                                                > >
                                                > > Hello-
                                                > >
                                                > > I have been said that I am a susac's syndrome candidate. I have
                                                > > been trying to get all the information that I can and have had
                                                > > trouble because there just isn't that much out there. All of it
                                                is
                                                > > in medical terms. I have been diagnosed with the ears, eyes and
                                                now
                                                > > they are waiting for me to go "crazy" before the doctors will
                                                > > diagnose me with Susac's syndrome. This site is great, maybe I
                                                can
                                                > > get my questions answered from people that are living with this
                                                > > disease. I haven't been able to work for 3 and half months now.
                                                > > The vertigo gets so bad and the nausea too. The headaches get
                                                > > really bad too. I haven't been able to drive for the same amount
                                                of
                                                > > time. Luckily, my dad has been able to take me to all my doctor
                                                > > apointments. I live with my dad and stepmother and they aren't
                                                all
                                                > > that understanding about the not working and think that I am
                                                > > contageous to other people and that my immune system is down. My
                                                > > step mother thinks that she is going to make me sick, give me a
                                                cold
                                                > > or the flu or something. The doctors say that none of this is
                                                true
                                                > > though. She makes me feel unwelcome to stay there which is
                                                really
                                                > > stressing me out. The only treatment I have undergone is
                                                > > prednisone. I have a spinal tap and second MRI next week. I'm
                                                > > really scared about what is to come in the future with this
                                                syndrome.
                                                > >
                                                > > How has your general life routine changed? Can life go back to
                                                > > normal when treatment starts? Did you go through a depressed
                                                > > stage? Any feedback and information that anyone can give would
                                                be
                                                > > greatly appreciated.
                                                > >
                                                > > Best regards,
                                                > > Christina (33 yo, in Virginia)
                                                > >
                                                >
                                              • ralphneidert
                                                Hi Christina, If there is anything that I can do to help you please let me know. I am located in Maryland, not far from Virginia. Keep moving forward.
                                                Message 23 of 28 , Feb 6, 2008
                                                • 0 Attachment
                                                  Hi Christina,
                                                  If there is anything that I can do to help you please let me know. I
                                                  am located in Maryland, not far from Virginia. Keep moving forward.
                                                  --- In susac_syndrome@yahoogroups.com, "miss_va_31" <miss_va_31@...>
                                                  wrote:
                                                  >
                                                  > Hello Ralph-
                                                  >
                                                  > I am really sorry to hear about your wife. That is a tough one!!
                                                  > I'm here if you need to talk. Mine isn't that bad. Still no
                                                  > encephalopathy. I have had one IVIG treatment, that didn't go to
                                                  > well. My veins didn't cooperate very well. But, I did make it
                                                  > through. Still not really working. I have had my neuropsych test,
                                                  > no results yet. I see my Neurologist today, though. I just started
                                                  > on an antidepressant, just makes me jittery and my mind race.
                                                  > Anyway, let me know if I can help in anyway with the support group.
                                                  > I'm not sure where to start either. I don't know anyone else with
                                                  > susac's syndrome. Best of luck!
                                                  >
                                                  > Christina
                                                  >
                                                  > --- In susac_syndrome@yahoogroups.com, "ralphneidert"
                                                  > <ralphneidert@> wrote:
                                                  > >
                                                  > > Hello Christina,
                                                  > > My wife of 28 yrs recently passed away from complications caused by
                                                  > > Susac's. She was 51. We live in Maryland. My wife had hearing loss,
                                                  > > retinal occlusions and encephalopathy. A blood clot caused from
                                                  > being
                                                  > > immobile due to the encephalopathy is what caused her death. If
                                                  > there
                                                  > > is anything that I can do to help you please let me know. I want to
                                                  > > start a support group for patients and family, but don't know were
                                                  > to
                                                  > > start.
                                                  > > --- In susac_syndrome@yahoogroups.com, "miss_va_31" <miss_va_31@>
                                                  > > wrote:
                                                  > > >
                                                  > > > --- In susac_syndrome@yahoogroups.com, "lisagrindey"
                                                  > > > <lisagrindey@> wrote:
                                                  > > > >
                                                  > > > >
                                                  > > > >
                                                  > > > > Hello Melissa,
                                                  > > > > How do you manage with all those diagnoses?? Do you work? Do
                                                  > you
                                                  > > > have
                                                  > > > > a family? I am impressed with everyone here and they continue
                                                  > on
                                                  > > > with
                                                  > > > > their fight. Very impressive. They have said my daughter is very
                                                  > > > > classic case of Susac. Not too complicated yet. I hope, we will
                                                  > > > see.
                                                  > > > > Did you always have problems with your legs? What about
                                                  > > > > encephalopathy? Can anyone elaborate of this for me. I
                                                  > understand
                                                  > > > the
                                                  > > > > definition I just want to know how you are able to function?
                                                  > work?
                                                  > > > and
                                                  > > > > how was your family there for you that really helped you the
                                                  > most.
                                                  > > > I
                                                  > > > > worry about that part. Does this disease come back worse each
                                                  > > > episode?
                                                  > > > > Best Regards,
                                                  > > > > Lisa
                                                  > > > >
                                                  > > >
                                                  > > >
                                                  > > > Hello-
                                                  > > >
                                                  > > > I have been said that I am a susac's syndrome candidate. I have
                                                  > > > been trying to get all the information that I can and have had
                                                  > > > trouble because there just isn't that much out there. All of it
                                                  > is
                                                  > > > in medical terms. I have been diagnosed with the ears, eyes and
                                                  > now
                                                  > > > they are waiting for me to go "crazy" before the doctors will
                                                  > > > diagnose me with Susac's syndrome. This site is great, maybe I
                                                  > can
                                                  > > > get my questions answered from people that are living with this
                                                  > > > disease. I haven't been able to work for 3 and half months now.
                                                  > > > The vertigo gets so bad and the nausea too. The headaches get
                                                  > > > really bad too. I haven't been able to drive for the same amount
                                                  > of
                                                  > > > time. Luckily, my dad has been able to take me to all my doctor
                                                  > > > apointments. I live with my dad and stepmother and they aren't
                                                  > all
                                                  > > > that understanding about the not working and think that I am
                                                  > > > contageous to other people and that my immune system is down. My
                                                  > > > step mother thinks that she is going to make me sick, give me a
                                                  > cold
                                                  > > > or the flu or something. The doctors say that none of this is
                                                  > true
                                                  > > > though. She makes me feel unwelcome to stay there which is
                                                  > really
                                                  > > > stressing me out. The only treatment I have undergone is
                                                  > > > prednisone. I have a spinal tap and second MRI next week. I'm
                                                  > > > really scared about what is to come in the future with this
                                                  > syndrome.
                                                  > > >
                                                  > > > How has your general life routine changed? Can life go back to
                                                  > > > normal when treatment starts? Did you go through a depressed
                                                  > > > stage? Any feedback and information that anyone can give would
                                                  > be
                                                  > > > greatly appreciated.
                                                  > > >
                                                  > > > Best regards,
                                                  > > > Christina (33 yo, in Virginia)
                                                  > > >
                                                  > >
                                                  >
                                                • tinkerbell10261991
                                                  ... do i see some one 2 help me with my case of susacs i was diagnosed june 2007 im in bad shape. i lost hearing in my right ear ive had 6 retinal strokes
                                                  Message 24 of 28 , Apr 23, 2008
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                                                    --- In susac_syndrome@yahoogroups.com, "gerbie15066" where in PA
                                                    do i see some one 2 help me with my case of susacs i was diagnosed
                                                    june 2007 im in bad shape. i lost hearing in my right ear ive had 6
                                                    retinal strokes please i need 2 talk 2 some one that knows how i
                                                    feel.<gerbie15066@...> wrote:
                                                    >
                                                    > Hello my name is Renee from PA. I was diagnosed with susac in
                                                    2001.
                                                    > I currently have no hearing in my left ear. I have returned
                                                    > completly to the life I had 6 years ago it was a long strugle but you
                                                    > do get your life back. If you are willing to make a trip to PA I
                                                    > could get you in contact with my neorologist who is excellent about
                                                    > this disease.
                                                    > I am not going to lye it is a hard strugle but you will get through
                                                    > this just go for the treatments they do help you out alot. Your
                                                    > imune system is down but it will get better. I am 34 years old I was
                                                    > 28 when diagnosed. If you have any question PLEASE do not
                                                    hesitate
                                                    > to ask. We all from this group know what you are going through.
                                                    >
                                                    > Renee
                                                    >
                                                    >
                                                    >
                                                    > --- In susac_syndrome@yahoogroups.com, "superwelshish"
                                                    > <rblackborow@> wrote:
                                                    > >
                                                    > > --- In susac_syndrome@yahoogroups.com, "miss_va_31"
                                                    <miss_va_31@>
                                                    > > wrote:
                                                    > > >
                                                    > > > --- In susac_syndrome@yahoogroups.com, "superwelshish"
                                                    > > > <rblackborow@> wrote:
                                                    > > > >
                                                    > > > > --- In susac_syndrome@yahoogroups.com, "miss_va_31"
                                                    > <miss_va_31@>
                                                    > > > > wrote:
                                                    > > > > >
                                                    > > > > > --- In susac_syndrome@yahoogroups.com, "lisagrindey"
                                                    > > > > > <lisagrindey@> wrote:
                                                    > > > > > >
                                                    > > > > > >
                                                    > > > > > >
                                                    > > > > > > Hello Melissa,
                                                    > > > > > > How do you manage with all those diagnoses?? Do you
                                                    work?
                                                    > Do
                                                    > > > you
                                                    > > > > > have
                                                    > > > > > > a family? I am impressed with everyone here and they
                                                    > continue
                                                    > > > on
                                                    > > > > > with
                                                    > > > > > > their fight. Very impressive. They have said my daughter
                                                    is
                                                    > > very
                                                    > > > > > > classic case of Susac. Not too complicated yet. I hope, we
                                                    > > will
                                                    > > > > > see.
                                                    > > > > > > Did you always have problems with your legs? What about
                                                    > > > > > > encephalopathy? Can anyone elaborate of this for me. I
                                                    > > > > understand
                                                    > > > > > the
                                                    > > > > > > definition I just want to know how you are able to
                                                    > function?
                                                    > > > > work?
                                                    > > > > > and
                                                    > > > > > > how was your family there for you that really helped you
                                                    > the
                                                    > > > > most.
                                                    > > > > > I
                                                    > > > > > > worry about that part. Does this disease come back worse
                                                    > each
                                                    > > > > > episode?
                                                    > > > > > > Best Regards,
                                                    > > > > > > Lisa
                                                    > > > > > >
                                                    > > > > >
                                                    > > > > >
                                                    > > > > > Hello-
                                                    > > > > >
                                                    > > > > > I have been said that I am a susac's syndrome candidate. I
                                                    > > have
                                                    > > > > > been trying to get all the information that I can and have
                                                    > had
                                                    > > > > > trouble because there just isn't that much out there. All of
                                                    > > it
                                                    > > > is
                                                    > > > > > in medical terms. I have been diagnosed with the ears, eyes
                                                    > > and
                                                    > > > > now
                                                    > > > > > they are waiting for me to go "crazy" before the doctors will
                                                    > > > > > diagnose me with Susac's syndrome. This site is great,
                                                    maybe
                                                    > I
                                                    > > > can
                                                    > > > > > get my questions answered from people that are living with
                                                    > this
                                                    > > > > > disease. I haven't been able to work for 3 and half months
                                                    > > now.
                                                    > > > > > The vertigo gets so bad and the nausea too. The headaches
                                                    > get
                                                    > > > > > really bad too. I haven't been able to drive for the same
                                                    > > amount
                                                    > > > > of
                                                    > > > > > time. Luckily, my dad has been able to take me to all my
                                                    > > doctor
                                                    > > > > > apointments. I live with my dad and stepmother and they
                                                    > aren't
                                                    > > > all
                                                    > > > > > that understanding about the not working and think that I am
                                                    > > > > > contageous to other people and that my immune system is
                                                    > down.
                                                    > > My
                                                    > > > > > step mother thinks that she is going to make me sick, give
                                                    me
                                                    > a
                                                    > > > > cold
                                                    > > > > > or the flu or something. The doctors say that none of this
                                                    > is
                                                    > > > true
                                                    > > > > > though. She makes me feel unwelcome to stay there which
                                                    is
                                                    > > > really
                                                    > > > > > stressing me out. The only treatment I have undergone is
                                                    > > > > > prednisone. I have a spinal tap and second MRI next week.
                                                    > I'm
                                                    > > > > > really scared about what is to come in the future with this
                                                    > > > > syndrome.
                                                    > > > > >
                                                    > > > > > How has your general life routine changed? Can life go back
                                                    > to
                                                    > > > > > normal when treatment starts? Did you go through a
                                                    depressed
                                                    > > > > > stage? Any feedback and information that anyone can give
                                                    > would
                                                    > > > be
                                                    > > > > > greatly appreciated.
                                                    > > > > >
                                                    > > > > > Best regards,
                                                    > > > > > Christina (33 yo, in Virginia)
                                                    > > > > >
                                                    > > > >
                                                    > > > > Hey Christina... and welcome to the group ;-)
                                                    > > > >
                                                    > > > > Firstly try not to worry about the going crazy bit because
                                                    > thats
                                                    > > > not
                                                    > > > > really what happens, well thats not whats happened to my
                                                    > partner,
                                                    > > > its
                                                    > > > > more of an unawareness of what happening around you and
                                                    > conffusion
                                                    > > (
                                                    > > > > well thats how it is for Jen ) and the good news is that it
                                                    > does
                                                    > > > not
                                                    > > > > last for very long even if you do get it. Early treatment with
                                                    > > the
                                                    > > > > prendisone will give you a huge advantage, so that can only be
                                                    > a
                                                    > > > good
                                                    > > > > thing !!
                                                    > > > > If you are diagnosed with Susacs there is no doubt that it
                                                    > will
                                                    > > > > change your life... i know thats not nice to hear, but its the
                                                    > > > truth
                                                    > > > > and yes depression will also be a big problem.
                                                    > > > >
                                                    > > > > The good news is...... that one day you should beable to return
                                                    > > to
                                                    > > > a
                                                    > > > > near normal life, ( although it is highly unlikely your hearing
                                                    > > > will
                                                    > > > > improve ) the doctors say it usually runs its course over a
                                                    > two
                                                    > > to
                                                    > > > > five year period.
                                                    > > > >
                                                    > > > >
                                                    > > > > I think most of the other sufferers will agree that having a
                                                    > > > strong
                                                    > > > > mental attitude is the best way to say your going to beat
                                                    > > this !!!
                                                    > > > >
                                                    > > > >
                                                    > > > > I wish you all the luck in the world !!!
                                                    > > > >
                                                    > > > > Kind regards
                                                    > > > > Richard
                                                    > > > >
                                                    > > >
                                                    > > > Hey Richard-
                                                    > > >
                                                    > > > Thank you for the words of incouragement. Has Jen been able
                                                    to
                                                    > > work
                                                    > > > at all through this whole thing? Either full or part time? When
                                                    > > she
                                                    > > > was diagnosed did you both do your homework to find out as
                                                    much
                                                    > as
                                                    > > > you could about Susac's? Did she have IVIG treatment? If so,
                                                    > how
                                                    > > > did her body react to the treatment? I hope that these questions
                                                    > > > aren't too personal and if they are please let me know. I have
                                                    > so
                                                    > > > many questions and no one that has gone through it to ask.
                                                    > > >
                                                    > > > Thanks again,
                                                    > > > Christina
                                                    > > >Hi Christina,
                                                    > > Jens not worked a single day since being diagnosed, she still has
                                                    > > alot of problems with basic stuff like walking. Were not sure if
                                                    > the
                                                    > > IVIG worked as Jen seemed to come out of the confussion on her
                                                    own,
                                                    > > but there were no side effects which was good.
                                                    > > The first thing i did when we she was diagnosed was to email Dr
                                                    > Susac
                                                    > > and he said that Jen would get better with time.
                                                    > > If you do a google search on the net for " myfox twin cities susac
                                                    > > syndrome " it will bring up a video interview of a girl over there
                                                    > in
                                                    > > the states with Susacs, well worth watching !!!
                                                    > > Below ive copied a study from March this year its a study of 100
                                                    > > sufferers.
                                                    > >
                                                    > > Any questions you have dont hesitate to ask and im sure if i carnt
                                                    > > answer them someone else in the group will
                                                    > > Warm regards
                                                    > > Richard
                                                    > > Long-Term Outcome in Susac Syndrome.
                                                    > >
                                                    > > Article
                                                    > >
                                                    > > Medicine. 86(2):93-102, March 2007.
                                                    > > Aubart-Cohen, Fleur MD; Klein, Isabelle MD, PhD; Alexandra, Jean-
                                                    > > Francois MD; Bodaghi, Bahram MD, PhD; Doan, Serge MD;
                                                    Fardeau,
                                                    > > Christine MD; Lavallee, Philippa MD; Piette, Jean-Charles MD;
                                                    > Hoang,
                                                    > > Phuc Le MD, PhD; Papo, Thomas MD
                                                    > > Abstract:
                                                    > > Susac syndrome is characterized by the clinical triad of
                                                    > > encephalopathy, hearing loss, and retinal artery branch occlusions,
                                                    > > mostly in young women. To our knowledge, long-term outcome and
                                                    > impact
                                                    > > of pregnancy have not been specifically addressed. We report a
                                                    > series
                                                    > > of 9 patients (7 female, 2 male) followed at the same institution,
                                                    > > with special emphasis on clinical outcome including pregnancy and
                                                    > > long-term sequelae. Clinical, brain magnetic resonance imaging
                                                    > (MRI),
                                                    > > funduscopy, retinal angiography, and audiogram data were
                                                    recorded
                                                    > > every 3-12 months. We also analyzed the 92 previously reported
                                                    > cases
                                                    > > of Susac syndrome.
                                                    > >
                                                    > > Mean follow-up was 6.4 years. Age at onset was 30.4 years. The
                                                    > first
                                                    > > symptom occurred between April and September in 7 of 9 patients
                                                    in
                                                    > > the current study, and in 68% of all patients. The complete triad
                                                    > at
                                                    > > onset was clinically obvious in only 1 of 9 patients. Brain
                                                    > > involvement was heralded by headache and symptoms of
                                                    > encephalopathy.
                                                    > > Cerebrospinal fluid was abnormal in 5 patients showing pleocytosis
                                                    > > (mean, 24.6; range, 6-85 cells/mL) and elevated protein level
                                                    > (mean,
                                                    > > 210; range, 113-365 mg/dL). Over time, quantitative brain MRI
                                                    > > analysis showed that the number of lesions diminished and did not
                                                    > > parallel clinical flares, and MRI never normalized. At the end of
                                                    > > follow-up, no patient had severe impairment, and all but 1 returned
                                                    > > to work.
                                                    > >
                                                    > > Inner ear involvement was present at onset in 2 patients and
                                                    > occurred
                                                    > > in others with a mean delay of 11 months. Initially unilateral in
                                                    > 3,
                                                    > > it became bilateral in all. Mean hearing loss was 34 dB (range, 15-
                                                    > 70
                                                    > > dB). Hearing loss never improved, either spontaneously or under
                                                    > > treatment. The eye was involved at onset in 8 patients, and after 3
                                                    > > years in 1. All had multiple bilateral retinal artery branch
                                                    > > occlusions and/or dye leakage with hyperfluorescence of the
                                                    > arterial
                                                    > > wall on fluorescein angiography. Over time, angiography
                                                    normalized
                                                    > in
                                                    > > 3 patients. In others, it was still abnormal at the end of follow-
                                                    > up
                                                    > > (range, 1.5-10 yr). On late findings, fluorescein leakage was more
                                                    > > frequent than true arterial occlusion. Eye involvement was mostly
                                                    > > asymptomatic, unilateral, peripheral, and resumed spontaneously
                                                    to
                                                    > > remit in other sites over time.
                                                    > >
                                                    > > Corticosteroids were efficient to treat encephalopathy, with
                                                    > relapses
                                                    > > occurring when the dosage was tapered. Steroid treatment did not
                                                    > > improve hearing loss or prevent new retinal arteriolar occlusions.
                                                    > > Anticoagulation had a role in treating encephalopathy and retinal
                                                    > > arteriolar occlusions.
                                                    > >
                                                    > > Three patients had 4 pregnancies. Two pregnancies needed
                                                    induced
                                                    > > abortion. One pregnancy was uneventful. One pregnancy was
                                                    > complicated
                                                    > > with Susac disease flare in the early postpartum period.
                                                    > >
                                                    > > In conclusion, at the end of follow-up, most patients had returned
                                                    > to
                                                    > > work and none had severe impairment. Pregnancy may affect the
                                                    > course
                                                    > > of Susac syndrome, with relapse of encephalopathy postpartum.
                                                    Our
                                                    > > main finding was that the course of Susac syndrome is not self-
                                                    > > limited as previously thought, since isolated retinal arteriolar
                                                    > > involvement may occur as a very late manifestation.
                                                    > >
                                                    > > (C) 2007 Lippincott Williams & Wilkins, Inc.
                                                    > >
                                                    >
                                                  • mikabest@smartchat.net.au
                                                    Hi; MY name is Karen and I am 40 I first had I first had problems 6.5years ago 3 weeks after my 3rd child was born. It is a tough road you are on but you need
                                                    Message 25 of 28 , Apr 24, 2008
                                                    • 0 Attachment
                                                      Hi;
                                                      MY name is Karen and I am 40 I first had I first had problems 6.5years ago
                                                      3 weeks after my 3rd child was born. It is a tough road you are on but you
                                                      need to get yourself a great neurologist who you can call on at anytime and
                                                      research on this line about different treatments . I am sorry to say that
                                                      all the eyesight and hearing lose that I have had over the years hasn't
                                                      returned but I manage to function from day to day OK. My biggest problem is
                                                      my depression which is both a site effect of medication and part of the
                                                      illness and because I had just had a baby they think it was/is postnatal.
                                                      So see some one and take meds if need be it doesn't make you weak.
                                                      I have had prednisolone for the last 6.5years in differing doses
                                                      -IVIG
                                                      -IV methylprednisolone over a 5 day period this only used when I have a new
                                                      flare up
                                                      -varying doses of anti-depressants
                                                      -seen pycologist still seeing her
                                                      -plasmapheresis
                                                      -cyclosporin

                                                      But life does get better and the flare ups for me are a lot less frequent
                                                      and severity.

                                                      I know when you are in the middle of this it doesn't seem to be a way out
                                                      but what kept me going was my husband and the thought of my kids growing
                                                      and needing their mother.
                                                      Hang in there and check out the depression as you sound very low.
                                                      Karen
                                                      Perth, Western Australia
                                                      Original Message:
                                                      -----------------
                                                      From: tinkerbell10261991 tinkerbell10261991@...
                                                      Date: Thu, 24 Apr 2008 01:44:41 -0000
                                                      To: susac_syndrome@yahoogroups.com
                                                      Subject: [susac_syndrome] Re: i need 2 talk .


                                                      --- In susac_syndrome@yahoogroups.com, "gerbie15066" where in PA
                                                      do i see some one 2 help me with my case of susacs i was diagnosed
                                                      june 2007 im in bad shape. i lost hearing in my right ear ive had 6
                                                      retinal strokes please i need 2 talk 2 some one that knows how i
                                                      feel.<gerbie15066@...> wrote:
                                                      >
                                                      > Hello my name is Renee from PA. I was diagnosed with susac in
                                                      2001.
                                                      > I currently have no hearing in my left ear. I have returned
                                                      > completly to the life I had 6 years ago it was a long strugle but you
                                                      > do get your life back. If you are willing to make a trip to PA I
                                                      > could get you in contact with my neorologist who is excellent about
                                                      > this disease.
                                                      > I am not going to lye it is a hard strugle but you will get through
                                                      > this just go for the treatments they do help you out alot. Your
                                                      > imune system is down but it will get better. I am 34 years old I was
                                                      > 28 when diagnosed. If you have any question PLEASE do not
                                                      hesitate
                                                      > to ask. We all from this group know what you are going through.
                                                      >
                                                      > Renee
                                                      >
                                                      >
                                                      >
                                                      > --- In susac_syndrome@yahoogroups.com, "superwelshish"
                                                      > <rblackborow@> wrote:
                                                      > >
                                                      > > --- In susac_syndrome@yahoogroups.com, "miss_va_31"
                                                      <miss_va_31@>
                                                      > > wrote:
                                                      > > >
                                                      > > > --- In susac_syndrome@yahoogroups.com, "superwelshish"
                                                      > > > <rblackborow@> wrote:
                                                      > > > >
                                                      > > > > --- In susac_syndrome@yahoogroups.com, "miss_va_31"
                                                      > <miss_va_31@>
                                                      > > > > wrote:
                                                      > > > > >
                                                      > > > > > --- In susac_syndrome@yahoogroups.com, "lisagrindey"
                                                      > > > > > <lisagrindey@> wrote:
                                                      > > > > > >
                                                      > > > > > >
                                                      > > > > > >
                                                      > > > > > > Hello Melissa,
                                                      > > > > > > How do you manage with all those diagnoses?? Do you
                                                      work?
                                                      > Do
                                                      > > > you
                                                      > > > > > have
                                                      > > > > > > a family? I am impressed with everyone here and they
                                                      > continue
                                                      > > > on
                                                      > > > > > with
                                                      > > > > > > their fight. Very impressive. They have said my daughter
                                                      is
                                                      > > very
                                                      > > > > > > classic case of Susac. Not too complicated yet. I hope, we
                                                      > > will
                                                      > > > > > see.
                                                      > > > > > > Did you always have problems with your legs? What about
                                                      > > > > > > encephalopathy? Can anyone elaborate of this for me. I
                                                      > > > > understand
                                                      > > > > > the
                                                      > > > > > > definition I just want to know how you are able to
                                                      > function?
                                                      > > > > work?
                                                      > > > > > and
                                                      > > > > > > how was your family there for you that really helped you
                                                      > the
                                                      > > > > most.
                                                      > > > > > I
                                                      > > > > > > worry about that part. Does this disease come back worse
                                                      > each
                                                      > > > > > episode?
                                                      > > > > > > Best Regards,
                                                      > > > > > > Lisa
                                                      > > > > > >
                                                      > > > > >
                                                      > > > > >
                                                      > > > > > Hello-
                                                      > > > > >
                                                      > > > > > I have been said that I am a susac's syndrome candidate. I
                                                      > > have
                                                      > > > > > been trying to get all the information that I can and have
                                                      > had
                                                      > > > > > trouble because there just isn't that much out there. All of
                                                      > > it
                                                      > > > is
                                                      > > > > > in medical terms. I have been diagnosed with the ears, eyes
                                                      > > and
                                                      > > > > now
                                                      > > > > > they are waiting for me to go "crazy" before the doctors will
                                                      > > > > > diagnose me with Susac's syndrome. This site is great,
                                                      maybe
                                                      > I
                                                      > > > can
                                                      > > > > > get my questions answered from people that are living with
                                                      > this
                                                      > > > > > disease. I haven't been able to work for 3 and half months
                                                      > > now.
                                                      > > > > > The vertigo gets so bad and the nausea too. The headaches
                                                      > get
                                                      > > > > > really bad too. I haven't been able to drive for the same
                                                      > > amount
                                                      > > > > of
                                                      > > > > > time. Luckily, my dad has been able to take me to all my
                                                      > > doctor
                                                      > > > > > apointments. I live with my dad and stepmother and they
                                                      > aren't
                                                      > > > all
                                                      > > > > > that understanding about the not working and think that I am
                                                      > > > > > contageous to other people and that my immune system is
                                                      > down.
                                                      > > My
                                                      > > > > > step mother thinks that she is going to make me sick, give
                                                      me
                                                      > a
                                                      > > > > cold
                                                      > > > > > or the flu or something. The doctors say that none of this
                                                      > is
                                                      > > > true
                                                      > > > > > though. She makes me feel unwelcome to stay there which
                                                      is
                                                      > > > really
                                                      > > > > > stressing me out. The only treatment I have undergone is
                                                      > > > > > prednisone. I have a spinal tap and second MRI next week.
                                                      > I'm
                                                      > > > > > really scared about what is to come in the future with this
                                                      > > > > syndrome.
                                                      > > > > >
                                                      > > > > > How has your general life routine changed? Can life go back
                                                      > to
                                                      > > > > > normal when treatment starts? Did you go through a
                                                      depressed
                                                      > > > > > stage? Any feedback and information that anyone can give
                                                      > would
                                                      > > > be
                                                      > > > > > greatly appreciated.
                                                      > > > > >
                                                      > > > > > Best regards,
                                                      > > > > > Christina (33 yo, in Virginia)
                                                      > > > > >
                                                      > > > >
                                                      > > > > Hey Christina... and welcome to the group ;-)
                                                      > > > >
                                                      > > > > Firstly try not to worry about the going crazy bit because
                                                      > thats
                                                      > > > not
                                                      > > > > really what happens, well thats not whats happened to my
                                                      > partner,
                                                      > > > its
                                                      > > > > more of an unawareness of what happening around you and
                                                      > conffusion
                                                      > > (
                                                      > > > > well thats how it is for Jen ) and the good news is that it
                                                      > does
                                                      > > > not
                                                      > > > > last for very long even if you do get it. Early treatment with
                                                      > > the
                                                      > > > > prendisone will give you a huge advantage, so that can only be
                                                      > a
                                                      > > > good
                                                      > > > > thing !!
                                                      > > > > If you are diagnosed with Susacs there is no doubt that it
                                                      > will
                                                      > > > > change your life... i know thats not nice to hear, but its the
                                                      > > > truth
                                                      > > > > and yes depression will also be a big problem.
                                                      > > > >
                                                      > > > > The good news is...... that one day you should beable to return
                                                      > > to
                                                      > > > a
                                                      > > > > near normal life, ( although it is highly unlikely your hearing
                                                      > > > will
                                                      > > > > improve ) the doctors say it usually runs its course over a
                                                      > two
                                                      > > to
                                                      > > > > five year period.
                                                      > > > >
                                                      > > > >
                                                      > > > > I think most of the other sufferers will agree that having a
                                                      > > > strong
                                                      > > > > mental attitude is the best way to say your going to beat
                                                      > > this !!!
                                                      > > > >
                                                      > > > >
                                                      > > > > I wish you all the luck in the world !!!
                                                      > > > >
                                                      > > > > Kind regards
                                                      > > > > Richard
                                                      > > > >
                                                      > > >
                                                      > > > Hey Richard-
                                                      > > >
                                                      > > > Thank you for the words of incouragement. Has Jen been able
                                                      to
                                                      > > work
                                                      > > > at all through this whole thing? Either full or part time? When
                                                      > > she
                                                      > > > was diagnosed did you both do your homework to find out as
                                                      much
                                                      > as
                                                      > > > you could about Susac's? Did she have IVIG treatment? If so,
                                                      > how
                                                      > > > did her body react to the treatment? I hope that these questions
                                                      > > > aren't too personal and if they are please let me know. I have
                                                      > so
                                                      > > > many questions and no one that has gone through it to ask.
                                                      > > >
                                                      > > > Thanks again,
                                                      > > > Christina
                                                      > > >Hi Christina,
                                                      > > Jens not worked a single day since being diagnosed, she still has
                                                      > > alot of problems with basic stuff like walking. Were not sure if
                                                      > the
                                                      > > IVIG worked as Jen seemed to come out of the confussion on her
                                                      own,
                                                      > > but there were no side effects which was good.
                                                      > > The first thing i did when we she was diagnosed was to email Dr
                                                      > Susac
                                                      > > and he said that Jen would get better with time.
                                                      > > If you do a google search on the net for " myfox twin cities susac
                                                      > > syndrome " it will bring up a video interview of a girl over there
                                                      > in
                                                      > > the states with Susacs, well worth watching !!!
                                                      > > Below ive copied a study from March this year its a study of 100
                                                      > > sufferers.
                                                      > >
                                                      > > Any questions you have dont hesitate to ask and im sure if i carnt
                                                      > > answer them someone else in the group will
                                                      > > Warm regards
                                                      > > Richard
                                                      > > Long-Term Outcome in Susac Syndrome.
                                                      > >
                                                      > > Article
                                                      > >
                                                      > > Medicine. 86(2):93-102, March 2007.
                                                      > > Aubart-Cohen, Fleur MD; Klein, Isabelle MD, PhD; Alexandra, Jean-
                                                      > > Francois MD; Bodaghi, Bahram MD, PhD; Doan, Serge MD;
                                                      Fardeau,
                                                      > > Christine MD; Lavallee, Philippa MD; Piette, Jean-Charles MD;
                                                      > Hoang,
                                                      > > Phuc Le MD, PhD; Papo, Thomas MD
                                                      > > Abstract:
                                                      > > Susac syndrome is characterized by the clinical triad of
                                                      > > encephalopathy, hearing loss, and retinal artery branch occlusions,
                                                      > > mostly in young women. To our knowledge, long-term outcome and
                                                      > impact
                                                      > > of pregnancy have not been specifically addressed. We report a
                                                      > series
                                                      > > of 9 patients (7 female, 2 male) followed at the same institution,
                                                      > > with special emphasis on clinical outcome including pregnancy and
                                                      > > long-term sequelae. Clinical, brain magnetic resonance imaging
                                                      > (MRI),
                                                      > > funduscopy, retinal angiography, and audiogram data were
                                                      recorded
                                                      > > every 3-12 months. We also analyzed the 92 previously reported
                                                      > cases
                                                      > > of Susac syndrome.
                                                      > >
                                                      > > Mean follow-up was 6.4 years. Age at onset was 30.4 years. The
                                                      > first
                                                      > > symptom occurred between April and September in 7 of 9 patients
                                                      in
                                                      > > the current study, and in 68% of all patients. The complete triad
                                                      > at
                                                      > > onset was clinically obvious in only 1 of 9 patients. Brain
                                                      > > involvement was heralded by headache and symptoms of
                                                      > encephalopathy.
                                                      > > Cerebrospinal fluid was abnormal in 5 patients showing pleocytosis
                                                      > > (mean, 24.6; range, 6-85 cells/mL) and elevated protein level
                                                      > (mean,
                                                      > > 210; range, 113-365 mg/dL). Over time, quantitative brain MRI
                                                      > > analysis showed that the number of lesions diminished and did not
                                                      > > parallel clinical flares, and MRI never normalized. At the end of
                                                      > > follow-up, no patient had severe impairment, and all but 1 returned
                                                      > > to work.
                                                      > >
                                                      > > Inner ear involvement was present at onset in 2 patients and
                                                      > occurred
                                                      > > in others with a mean delay of 11 months. Initially unilateral in
                                                      > 3,
                                                      > > it became bilateral in all. Mean hearing loss was 34 dB (range, 15-
                                                      > 70
                                                      > > dB). Hearing loss never improved, either spontaneously or under
                                                      > > treatment. The eye was involved at onset in 8 patients, and after 3
                                                      > > years in 1. All had multiple bilateral retinal artery branch
                                                      > > occlusions and/or dye leakage with hyperfluorescence of the
                                                      > arterial
                                                      > > wall on fluorescein angiography. Over time, angiography
                                                      normalized
                                                      > in
                                                      > > 3 patients. In others, it was still abnormal at the end of follow-
                                                      > up
                                                      > > (range, 1.5-10 yr). On late findings, fluorescein leakage was more
                                                      > > frequent than true arterial occlusion. Eye involvement was mostly
                                                      > > asymptomatic, unilateral, peripheral, and resumed spontaneously
                                                      to
                                                      > > remit in other sites over time.
                                                      > >
                                                      > > Corticosteroids were efficient to treat encephalopathy, with
                                                      > relapses
                                                      > > occurring when the dosage was tapered. Steroid treatment did not
                                                      > > improve hearing loss or prevent new retinal arteriolar occlusions.
                                                      > > Anticoagulation had a role in treating encephalopathy and retinal
                                                      > > arteriolar occlusions.
                                                      > >
                                                      > > Three patients had 4 pregnancies. Two pregnancies needed
                                                      induced
                                                      > > abortion. One pregnancy was uneventful. One pregnancy was
                                                      > complicated
                                                      > > with Susac disease flare in the early postpartum period.
                                                      > >
                                                      > > In conclusion, at the end of follow-up, most patients had returned
                                                      > to
                                                      > > work and none had severe impairment. Pregnancy may affect the
                                                      > course
                                                      > > of Susac syndrome, with relapse of encephalopathy postpartum.
                                                      Our
                                                      > > main finding was that the course of Susac syndrome is not self-
                                                      > > limited as previously thought, since isolated retinal arteriolar
                                                      > > involvement may occur as a very late manifestation.
                                                      > >
                                                      > > (C) 2007 Lippincott Williams & Wilkins, Inc.
                                                      > >
                                                      >




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