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Re: [adie_syndrome] Holmes Adie's Syndrome

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  • Robert Batey
    Dear Kath , I share your thinking on the medical profession as I came up with the same lack of understanding ,strangely enough this has recent;y improved ,I am
    Message 1 of 9 , Feb 5, 2006
      Dear Kath ,
       
      I share your thinking on the medical profession as I came up with the same lack of understanding ,strangely enough this has recent;y improved ,I am working in China now fpr more that two years and was gobsmacked when the local doctor told me I had Aidies , she was very up to date on this condition and it appears that she had a lot of experience.
      She told me dont worry you have to live with Aidies and dont die with it neither will you end up with a walking cane unless some other illness befalls you as well.
      I have had this condition for more than 20 years and now forget about it , yes there are headaches but you can deal with this , I agree done let people mess with you eyes
       
      Hope a little comfort in theis finding
       
      Regards
       
      Bob Batey

      Denise Thilmony <pollyanna95926@...> wrote:
      Hi,
      I just have a quick question for you. Can you tell me
      the medicine that your doctor was referring to? I am
      curious as to what kind of side effects that the
      medicine in question might have. I take Pilocarpine
      drops and I worry about the side effects that they
      might have. Although, I have read several people that
      take them, without any problems.
      Thank you,
      Denise

      --- Rita Cullum <ritac42@...> wrote:

      > When I went to the nuro-opthamologist, he put a
      > solution of medicine that had actual cocaine in my
      > eyes to make sure I had Adies.  My pupil did what it
      > was suppose to do and he announced I had Adies.
      > Then
      > I had to do some eye exercises with these moving
      > beams
      > of lights and dots and a control in my hand to push
      > when I saw these lights and dots.  He told me that
      > there was nothing to do about Adies and the medicine
      > he could prescribe had bad side effects, but he did
      > give me the choice.  I left owing a big bill for a
      > second opinion that I had Adies.
      >
      > --- ozzymommy1962 <ozzymommy1962@...> wrote:
      >
      > >      Wow - so many people with the same problem! I
      > > thought I was the
      > > only one with this *syndrome*. Quite the
      > frustrating
      > > little bugger -
      > > it is! I went to the regular doc yesterday. The
      > > neurologist wanted
      > > her to perscribe drugs for the headaches. Why
      > didn't
      > > He help me with
      > > that??? I am VERY sceptical of docs., and will not
      > > go through life
      > > all drugged up (unless I was terminal). They just
      > > seem to make a bit
      > > too many mistakes, so I always question their
      > > decisions - ticking off
      > > more than my share of professionals, I'm sure,
      > > mainly the one's that
      > > feel that patients should be seen and not heard.
      > >      Anyway, she perscribed Triazalam, to help me
      > > sleep, which I will
      > > gladly take being as I haven't slept *normal* in
      > > close to 25 years.
      > > Does anyone have problems sleeping????
      > >      She aslo ordered me up some beta blockers -
      > > Atenolol - to
      > > prevent migraines. I have very low blood pressure
      > as
      > > it is and don't
      > > want to take this. I e-mailed the doc. and asked
      > her
      > > if there was
      > > anything else I could use. Anyone else have
      > chronic
      > > migraines????
      > >      The last drug she ordered me was Amerge, a
      > six
      > > pill perscription
      > > that costs WAY too much. So, I cannot justify the
      > > cost and will not
      > > be taking those either.
      > >      This doc. never even heard of Holmes Adies
      > > Syndrome!!! She was
      > > asking me questions!?!? I am supposed to go and
      > see
      > > a neuro -
      > > opthomologist (spelling???) Honestly, I don't know
      > > what he is
      > > supposed to do to help me. Has anyone else gone to
      > > one of these
      > > specialists??? I won't let him mess with my
      > pupils.
      > >      I hope that I am doing this correctly. Am I
      > > supposed to go to
      > > the site and post - or answer e-mails??? Do the
      > > e-mails go to this
      > > site as well as the individuals???
      > >      The neurologist told me that I will end up
      > > using a cain - anyone
      > > have that prognosis yet??? Does anyone know if the
      > > joints are
      > > affected to the point of cains, or walkers, or
      > > wheelchairs???
      > >      Does anyone know of any books that are aimed
      > at
      > > Adies and it's
      > > wonderful little *syndrome*???? (excuse the
      > attitude
      > > please - it's a
      > > very sunny day)
      > >       
      > >        Hope to hear from someone soon,
      > >                Thanks,
      > >                 Kath
      > >     
      > >
      > >
      > >
      > >
      > >
      > >
      >
      >
      > __________________________________________________
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    • Kathy Erickson
      Bob, Thank you so much for responding. As far as the headaches ~ I am on Topamax twice a day, the very lowest dose possible. I feel that the more drugs you
      Message 2 of 9 , Feb 6, 2006
        Bob,
             Thank you so much for responding. As far as the headaches ~ I am on Topamax twice a day, the very lowest dose possible. I feel that the more drugs you take, the more drugs you will have to take for the side effects from the drugs that you might not need so much of in the first place. So far, so good ~ but it is all in the early stages of getting used to the Topamax still. My headaches probably aren't so much from my Adies as they are migranes that I have been dealing with since I was a kid at 14 years old. I guess I thought everyone had blinding headaches all of the time, and I just dealt with them the best way Ithat I could.
             As far as Adies goes, I haven't let it get in the way very much in my past. Until reading a bit, I hadn't really noticed that my pupil went from *large* to *small*. I just thought that my vision was getting majorly nasty.  I did have to compensate a lot for the depth perception thing and all, but I am so accustomed to compensating in life. I am in awe of people who have no arms and use their feet to paint and write and such. I am dyslexic, and believe it or not ~ did not realize it until I was over 30! I just kind of made up little rules and games for myself to help myself learn to read and stuff in school. I must admit, I still cannot play bingo or do word searches well at all.
             When the neurologist told me that Adies and Adies Holmes Syndrome are two different things, that kind of worried me a bit. Although, him saying that he wants to see me in six months to see how much I regress doesn't make me happy either. Yeah, I'm falling and tripping, have no reflexes, joint and muscle stuff going on, no balance, classic of the Holmes syndrome - from what I gather, it is a neurological thing. I still have a lot of research to do on this and it is tough because there isn't much info out there. Also, whatever you do happen to find conflicts with anything else you might find.
             I'm still not *sure* that the diagnosis of Holmes Adies is actually correct. We shall see - Eh?
        Thanks For Listening,
        Kath

        Robert Batey <bobbikesandantiques@...> wrote:
        Dear Kath ,
         
        I share your thinking on the medical profession as I came up with the same lack of understanding ,strangely enough this has recent;y improved ,I am working in China now fpr more that two years and was gobsmacked when the local doctor told me I had Aidies , she was very up to date on this condition and it appears that she had a lot of experience.
        She told me dont worry you have to live with Aidies and dont die with it neither will you end up with a walking cane unless some other illness befalls you as well.
        I have had this condition for more than 20 years and now forget about it , yes there are headaches but you can deal with this , I agree done let people mess with you eyes
         
        Hope a little comfort in theis finding
         
        Regards
         
        Bob Batey

        Denise Thilmony <pollyanna95926@...> wrote:
        Hi,
        I just have a quick question for you. Can you tell me
        the medicine that your doctor was referring to? I am
        curious as to what kind of side effects that the
        medicine in question might have. I take Pilocarpine
        drops and I worry about the side effects that they
        might have. Although, I have read several people that
        take them, without any problems.
        Thank you,
        Denise

        --- Rita Cullum <ritac42@...> wrote:

        > When I went to the nuro-opthamologist, he put a
        > solution of medicine that had actual cocaine in my
        > eyes to make sure I had Adies.  My pupil did what it
        > was suppose to do and he announced I had Adies.
        > Then
        > I had to do some eye exercises with these moving
        > beams
        > of lights and dots and a control in my hand to push
        > when I saw these lights and dots.  He told me that
        > there was nothing to do about Adies and the medicine
        > he could prescribe had bad side effects, but he did
        > give me the choice.  I left owing a big bill for a
        > second opinion that I had Adies.
        >
        > --- ozzymommy1962 <ozzymommy1962@...> wrote:
        >
        > >      Wow - so many people with the same problem! I
        > > thought I was the
        > > only one with this *syndrome*. Quite the
        > frustrating
        > > little bugger -
        > > it is! I went to the regular doc yesterday. The
        > > neurologist wanted
        > > her to perscribe drugs for the headaches. Why
        > didn't
        > > He help me with
        > > that??? I am VERY sceptical of docs., and will not
        > > go through life
        > > all drugged up (unless I was terminal). They just
        > > seem to make a bit
        > > too many mistakes, so I always question their
        > > decisions - ticking off
        > > more than my share of professionals, I'm sure,
        > > mainly the one's that
        > > feel that patients should be seen and not heard.
        > >      Anyway, she perscribed Triazalam, to help me
        > > sleep, which I will
        > > gladly take being as I haven't slept *normal* in
        > > close to 25 years.
        > > Does anyone have problems sleeping????
        > >      She aslo ordered me up some beta blockers -
        > > Atenolol - to
        > > prevent migraines. I have very low blood pressure
        > as
        > > it is and don't
        > > want to take this. I e-mailed the doc. and asked
        > her
        > > if there was
        > > anything else I could use. Anyone else have
        > chronic
        > > migraines????
        > >      The last drug she ordered me was Amerge, a
        > six
        > > pill perscription
        > > that costs WAY too much. So, I cannot justify the
        > > cost and will not
        > > be taking those either.
        > >      This doc. never even heard of Holmes Adies
        > > Syndrome!!! She was
        > > asking me questions!?!? I am supposed to go and
        > see
        > > a neuro -
        > > opthomologist (spelling???) Honestly, I don't know
        > > what he is
        > > supposed to do to help me. Has anyone else gone to
        > > one of these
        > > specialists??? I won't let him mess with my
        > pupils.
        > >      I hope that I am doing this correctly. Am I
        > > supposed to go to
        > > the site and post - or answer e-mails??? Do the
        > > e-mails go to this
        > > site as well as the individuals???
        > >      The neurologist told me that I will end up
        > > using a cain - anyone
        > > have that prognosis yet??? Does anyone know if the
        > > joints are
        > > affected to the point of cains, or walkers, or
        > > wheelchairs???
        > >      Does anyone know of any books that are aimed
        > at
        > > Adies and it's
        > > wonderful little *syndrome*???? (excuse the
        > attitude
        > > please - it's a
        > > very sunny day)
        > >       
        > >        Hope to hear from someone soon,
        > >                Thanks,
        > >                 Kath
        > >     
        > >
        > >
        > >
        > >
        > >
        > >
        >
        >
        > __________________________________________________
        > Do You Yahoo!?
        > Tired of spam?  Yahoo! Mail has the best spam
        > protection around
        > http://mail.yahoo.com
        >


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