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how is everything?

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  • Sokenunese Myles
    Hey all, It has been some time; just wanted to let you know that I had another visit to my neuro-opthomologist the other day, and everything check out fine. I
    Message 1 of 10 , Jul 18, 2002
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      Hey all,

      It has been some time; just wanted to let you know that I had another visit to my neuro-opthomologist the other day, and everything check out fine.  I didn't know it before I went in that I was going to have my pupils dialated, not very pleasant. Not to mention that I didn't bring any sunglasses and I threw away those goofy roll-up shades, so when I went outside in that bright light it wasn't easy getting back to work...almost got hit by a car! lol. Anyhoo, I went in to see what was going on, because my migraines were getting worse and my vision is deteroriating - sensitivity to light, seeing spots, blurred and double vision; but my neuro-opthmologist said that my eyes weren't deteroriating.  Funny thing was that if he asked me if I had a neurologist, because he couldn't subscribe me migraine medication.  So my primary testing me on some migraine medication. (I don't know the name of it, but I'll let you know how that goes). 

      How is everyone else doing? How are your eyes? What's the status on your conditions kids? Any new clues or insights.  My drs. still have no idea how this happened to me.  *sigh*

      Take care,

      -Nese



      -Sokenunese
      adzaa_nez26@...



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    • sgerard029@aol.com
      Hi Nese, Those dilating drops are something, aren t they? Even with my regular sunglasses, I kept squinting for hours. No changes with me. I too had
      Message 2 of 10 , Jul 18, 2002
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        Hi Nese,

        Those dilating drops are something, aren't they?  Even with my regular sunglasses, I kept squinting for hours.  No changes with me.  I too had migraines for years and was always told it had nothing to do with my Adies - I started getting migraines 25 years ago when pregnant with my first child.  Now that I'm going thru menopause, they've pretty much stopped (thank God!).  Take care and good luck with those headaches!
        Stephanie
      • Erin Sullivan
        Hi all, I have joined the group and have been watching the mails. I was interested in the number of people who highlight the fact that they get headaches. I do
        Message 3 of 10 , Jul 20, 2002
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          Hi all,
           
          I have joined the group and have been watching the mails. I was interested in the number of people who highlight the fact that they get headaches. I do also - more and more. I also went back to the consultant who said that "headaches are not associated with Adies" then I was told that they were PROBABLY migraine. This isn't really good enough treatment ( in my opinion).
           
          What has raised my attention is how many of us get headaches - perhaps someone should look to verify the throw away comment that there is no association !!!!
           
          PS. Do any of you have joint problems?
           
          Regards
           
          Erin Sullivan (UK)
        • sgerard029@aol.com
          Hi Erin, From the time I was first pregnant (25 years ago) to maybe a year ago, I got incredible migraines and have always been told that the headaches and
          Message 4 of 10 , Jul 22, 2002
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            Hi Erin,

            From the time I was first pregnant (25 years ago) to maybe a year ago, I got incredible migraines and have always been told that the headaches and Adies have absolutely nothing in common.  I haven't had a bad migraine in approximately 6-8 months, but I still have the Adies.  My own personal feeling, no matter what anyone says, is that there is a relation.  I don't know when I got the Adies pupil, but the doctor's feel it was sometime in my 20's and that's when I first started getting migraines.  Good luck with your research!

            Stephanie
          • MStafford@Prodigy.net
            Erin, Here s a link. http://www.eyecare-information-service.org.uk/pages/information/disorders/adiespupil.htm It basically says that the syndrome itself does
            Message 5 of 10 , Jul 22, 2002
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              Erin,
                  It basically says that the syndrome itself  does not warrent that you get headaches. But rather because the syndrome produces changes in vision, this may cause headaches.
                  I myself was never prone to getting headaches, however, since the adie's, I get them slightly more often than before.  So far they are not in the migrane catagory.  I'm curious if you already wear glasses, or at least not before acquiring adie's?  I try to go once a year for a perscription check or sooner if I notice a change in vision.  So far that and a good pair of sunglasses are all I have had to do, and still cope with some near vision difficulty.
              Margo
                 
              ----- Original Message -----
              Sent: Saturday, July 20, 2002 12:55 PM
              Subject: RE: [adie_syndrome] how is everything?

              Hi all,
               
              I have joined the group and have been watching the mails. I was interested in the number of people who highlight the fact that they get headaches. I do also - more and more. I also went back to the consultant who said that "headaches are not associated with Adies" then I was told that they were PROBABLY migraine. This isn't really good enough treatment ( in my opinion).
               
              What has raised my attention is how many of us get headaches - perhaps someone should look to verify the throw away comment that there is no association !!!!
               
              PS. Do any of you have joint problems?
               
              Regards
               
              Erin Sullivan (UK)


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            • sarasaunt2002
              ... interested ... headaches. I do ... that ... were ... opinion). ... perhaps ... no ... Hi Erin et al, I originated in the UK, but now live in the US. I
              Message 6 of 10 , Nov 15, 2002
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                --- In adie_syndrome@y..., "Erin Sullivan" <erinsullivan_aus@y...>
                wrote:
                > Hi all,
                >
                > I have joined the group and have been watching the mails. I was
                interested
                > in the number of people who highlight the fact that they get
                headaches. I do
                > also - more and more. I also went back to the consultant who said
                that
                > "headaches are not associated with Adies" then I was told that they
                were
                > PROBABLY migraine. This isn't really good enough treatment ( in my
                opinion).
                >
                > What has raised my attention is how many of us get headaches -
                perhaps
                > someone should look to verify the throw away comment that there is
                no
                > association !!!!
                >
                > PS. Do any of you have joint problems?
                >
                > Regards
                >
                > Erin Sullivan (UK)
                Hi Erin et al, I originated in the UK, but now live in the US. I
                was diagnosed with Adie's this past week, after having unequal pupils
                for at least 5 weeks. I too have have a history of migraines,
                chickenpox, cold sores, water retention, esp. around my ankles, and
                yes, Erin, joint pain, esp. hips, and also pain around my ribs. (Also
                have sweating, but put it down to menopause, and the heat here, in
                Hawaii!) My ophthomologist says there is no relation between Adie's
                and headaches! Yet when he shone the light into my smaller pupil,
                boy, did it hurt! He says caused by a virus, and no need for CAT
                scan or MRI. He'll check me again "in a few months". Will continue
                to read the rest of the postings, but just wanted to say, yes, joint
                pain..... Aloha, Lynne
              • Renee N. Papadenis
                I too have joint pain, especially in my fingers. I am 34 yo however, I still contributed it to arthritis and saw my physician about it. All tests came back neg
                Message 7 of 10 , Nov 16, 2002
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                  I too have joint pain, especially in my fingers. I am 34 yo however, I still contributed it to arthritis and saw my physician about it. All tests came back neg for arthritis. I don't get headaches, I do have high blood pressure and tachycardia which I am being treated for. I found it interesting that you mentioned the joint pain. Thought I'd respond.
                  Thanks,
                  Renee
                  -----Original Message-----
                  From: sarasaunt2002 [mailto:takfmly@...]
                  Sent: Friday, November 15, 2002 11:30 PM
                  To: adie_syndrome@yahoogroups.com
                  Subject: [adie_syndrome] Re: how is everything?

                  --- In adie_syndrome@y..., "Erin Sullivan" <erinsullivan_aus@y...>
                  wrote:
                  > Hi all,
                  >
                  > I have joined the group and have been watching the mails. I was
                  interested
                  > in the number of people who highlight the fact that they get
                  headaches. I do
                  > also - more and more. I also went back to the consultant who said
                  that
                  > "headaches are not associated with Adies" then I was told that they
                  were
                  > PROBABLY migraine. This isn't really good enough treatment ( in my
                  opinion).
                  >
                  > What has raised my attention is how many of us get headaches -
                  perhaps
                  > someone should look to verify the throw away comment that there is
                  no
                  > association !!!!
                  >
                  > PS. Do any of you have joint problems?
                  >
                  > Regards
                  >
                  > Erin Sullivan (UK)
                  Hi Erin et al,  I originated in the UK, but now live in the US.  I
                  was diagnosed with Adie's this past week, after having unequal pupils
                  for at least 5 weeks.  I too have have a history of migraines,
                  chickenpox, cold sores, water retention, esp. around my ankles, and
                  yes, Erin, joint pain, esp. hips, and also pain around my ribs. (Also
                  have sweating, but put it down to menopause, and the heat here, in
                  Hawaii!) My ophthomologist says there is no relation between Adie's
                  and headaches! Yet when he shone the light into my smaller pupil,
                  boy, did it hurt!  He says caused by a virus, and no need for CAT
                  scan or MRI.  He'll check me again "in a few months".  Will continue
                  to read the rest of the postings, but just wanted to say, yes, joint
                  pain..... Aloha, Lynne



                  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
                • Sokenunese Myles
                  From my understanding from my neuro-opthomologist, Aide s affects the nerve tissues in the back of the eye as well. This same tissue area is also where
                  Message 8 of 10 , Nov 17, 2002
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                    From my understanding from my neuro-opthomologist, Aide's affects the nerve tissues in the back of the eye as well. This same tissue area is also where migraines affect it. If you have a history of migraines in your family, you are more likely to have migraines associated. The onset of migraines began after 2-3 months after I was diagnosed.

                    As for joint problems, in the last few weeks I am having difficulty with my right ankle. I have been having losing sensation, and I suspect this is from Aide's. (See archive messages)

                    Hope this helps

                    -Nese

                     sarasaunt2002 <takfmly@...> wrote:

                    > also - more and more. I also went back to the consultant who said
                    that
                    > "headaches are not associated with Adies" then I was told that they
                    were
                    > PROBABLY migraine. This isn't really good enough treatment ( in my
                    opinion).
                    >
                    > What has raised my attention is how many of us get headaches -
                    perhaps
                    > someone should look to verify the throw away comment that there is
                    no
                    > association !!!!
                    >
                    > PS. Do any of you have joint problems?
                    >
                    > Regards
                    >
                    > Erin Sullivan (UK)
                    Hi Erin et al, I originated in the UK, but now live in the US. I
                    was diagnosed with Adie's this past week, after having unequal pupils
                    for at least 5 weeks. I too have have a history of migraines,
                    chickenpox, cold sores, water retention, esp. around my ankles, and
                    yes, Erin, joint pain, esp. hips, and also pain around my ribs. (Also
                    have sweating, but put it down to menopause, and the heat here, in
                    Hawaii!) My ophthomologist says there is no relation between Adie's
                    and headaches! Yet when he shone the light into my smaller pupil,
                    boy, did it hurt! He says caused by a virus, and no need for CAT
                    scan or MRI. He'll check me again "in a few months". Will continue
                    to read the rest of the postings, but just wanted to say, yes, joint
                    pain..... Aloha, Lynne



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                    -Sokenunese

                    adzaa_nez26@...



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                  • Erin Sullivan
                    MessageHello everyone, Thanks for all the responses to my questions about migraines and joint problems. I have just seen a rheumatologist about the pain! My
                    Message 9 of 10 , Nov 29, 2002
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                      Hello everyone,
                       
                      Thanks for all the responses to my questions about migraines and joint problems.
                       
                      I have just seen a rheumatologist about the pain! My tests are all normal except that my rheumatoid factor is up a bit ( if I didn't have pain no-one would say anything!!! that's how little it is up).
                       
                      He has diagnosed Arthritis though - coz I have the pain and some joint inflammation.
                       
                      My immune system tested out fine.
                       
                      Now here is where I am going - Arthritis is associated with the immune system attacking you coz it thinks it has to. I am told that it is usually an "event" like a big virus or some trauma, that triggers arthritis(does this sound familiar?).
                       
                      I do not apparently have all the evidence of arthritis but enough for diagnosis . Also told that Arthritis is still a pretty big unknown with the medical world .......so its a bit basic.
                       
                      I am reading lots on arthritis and this appears to be so.
                       
                      I asked about any possible link between the Adies and arthritis but got a quick patronising smile and a NO.
                       
                      So are there other symptoms that both these conditions display .
                       
                      I have been given steroids to take on the basis of the diagnosis am not keen to do that especially when I now have 2 "event" triggered conditions that are not well understood and also appear to have some cross-over.
                       
                      Sorry for the verryyy long mail but feel the need to explore this as I feel that steroids look scary ( as I may not have arthritis and maybe its the adies or vice-versa) and I think there is more to look at before going that route.
                       
                      Take care
                       
                      Erin Sullivan (Cowell) the OZ in the UK
                    • Serra Nicole
                      Erin, My Rheumatoid factor was also slightly elevated when I found out I had aquired Adies in both eyes. At first the Rhumatologist thought I had Lupus, but
                      Message 10 of 10 , Dec 3, 2002
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                        Erin,
                        My Rheumatoid factor was also slightly elevated when I
                        found out I had aquired Adies in both eyes. At first
                        the Rhumatologist thought I had Lupus, but those tests
                        came out negative. I too believe there might be a
                        connection between the Adies and the rheumatoid
                        factor.
                        But then, who am I. LOL
                        Serra

                        --- Erin Sullivan <erinsullivan_aus@...> wrote:
                        > > My tests are all normal
                        > except that my rheumatoid factor is up a bit ( if I
                        > didn't have pain no-one
                        > would say anything!!! that's how little it is up).
                        >
                        >

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