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Hi, I've been recently diagnosed with Aide's pupil

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  • Nese Myles
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    Message 1 of 4 , Mar 26, 2002
      >
      > Hi all,
      >
      > I've been recently diagnosed with Aide's pupil. I haven't had much
      > luck on the web researching about this rare nuerological disease.
      > My
      > left pupil is bigger than my right, and I sometimes suffer from
      > small
      > migraines behind my left eye and blurred vision in the same eye.
      >
      > My nuro-opthomologist told me its a benign, non-progressive disease
      > that I contracted by a virus; and that there is 20-30% chance that
      > it
      > will move to my other eye. However, by looking at the different
      > websites, I didn't relize how rare it is, and I do not know if it
      > is
      > contagious, hereditary, or caused by something else. Everyone, it
      > seems, has their own theories and opinions. I've read through the
      > message archives in the adie_syndrome group, and I'm concerned it
      > will get worse for me.
      >
      > Any information would be helpful. Also, I notice I sweat alot too,
      > and I do have my reflexes. Very strange disease. I'm going to
      > follow
      > up with my mom and ask her about that side of the family about this
      > condition.
      >
      > Good luck everyone, and I will let you know what I can find out.
      >
      > Take Care,
      > -Nese
      >
      >
      > =====
      >
      >
      > __________________________________________________
      > Do You Yahoo!?
      > Yahoo! Sports - live college hoops coverage
      > http://sports.yahoo.com/
      >


      =====


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    • MStafford@Prodigy.net
      Hi Nese, I ve had this since 1992. It s rare but it seems like we ve been picking up in numbers here at this site. I m from USA. Others from England and Italy.
      Message 2 of 4 , Mar 30, 2002
        Hi Nese,
        I've had this since 1992. It's rare but it seems like we've been picking
        up in numbers here at this site. I'm from USA. Others from England and
        Italy. What's your general location?
        From what I've read, this is hereditary. You will notice some strange
        sweat patterns.For instance, I don't sweat on my left arm. If you let it,
        this thing could be a little unnerving. If one arm doesn't sweat and my left
        knee will sometimes not jerk, what's to prevent my heart from just stopping.
        The only thing that I can physically tell that has changed since 1992 is
        that my eye dialation is not as large.
        Good Luck with your searches! Have a good Holiday!
        Margo
        ----- Original Message -----
        From: Nese Myles <nese_myles@...>
        To: <adie_syndrome@yahoogroups.com>
        Sent: Tuesday, March 26, 2002 10:28 AM
        Subject: [adie_syndrome] Hi, I've been recently diagnosed with Aide's pupil



        >
        > Hi all,
        >
        > I've been recently diagnosed with Aide's pupil. I haven't had much
        > luck on the web researching about this rare nuerological disease.
        > My
        > left pupil is bigger than my right, and I sometimes suffer from
        > small
        > migraines behind my left eye and blurred vision in the same eye.
        >
        > My nuro-opthomologist told me its a benign, non-progressive disease
        > that I contracted by a virus; and that there is 20-30% chance that
        > it
        > will move to my other eye. However, by looking at the different
        > websites, I didn't relize how rare it is, and I do not know if it
        > is
        > contagious, hereditary, or caused by something else. Everyone, it
        > seems, has their own theories and opinions. I've read through the
        > message archives in the adie_syndrome group, and I'm concerned it
        > will get worse for me.
        >
        > Any information would be helpful. Also, I notice I sweat alot too,
        > and I do have my reflexes. Very strange disease. I'm going to
        > follow
        > up with my mom and ask her about that side of the family about this
        > condition.
        >
        > Good luck everyone, and I will let you know what I can find out.
        >
        > Take Care,
        > -Nese
        >
        >
        > =====
        >
        >
        > __________________________________________________
        > Do You Yahoo!?
        > Yahoo! Sports - live college hoops coverage
        > http://sports.yahoo.com/
        >


        =====


        __________________________________________________
        Do You Yahoo!?
        Yahoo! Movies - coverage of the 74th Academy Awards®
        http://movies.yahoo.com/




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      • Nese Myles
        Hi all, Just to let everyone know I am in Boston, Massachusetts, USA. I am 26 years old. I was diagnosed almost a month ago with Aide’s syndrome. So far
        Message 3 of 4 , Apr 3, 2002
          Hi all,

          Just to let everyone know I am in Boston, Massachusetts, USA. I am
          26 years old. I was diagnosed almost a month ago with Aide�s
          syndrome.

          So far the symptoms that I noticed in my eyes, besides my left pupil
          being dilated more than the other, that I sometimes have double or
          blurred vision, and sensitivity to sunlight. When I come indoors
          from bright sunny days, I cannot see out of my left eye and sometimes
          I see yellow spots. When my neuro-opthomologist shined the lights
          into my left eye, it was incredibly painful. My peripheral vision
          has increased dramatically too. I can see my computer monitor
          flickering as it refreshes. At night, the streetlights are very
          bright too, and it seems like I am always squinting. I also started
          suffering from migraines, especially on the left side of my face. I
          have been sweating a lot lately too, especially on my back,
          shoulders, and face, but I do not sweat on my forearms.

          As for my research so far, I have asked my Mom and my cousins on my
          Mom�s side of the family, and nothing yet. I am going home to Arizona
          to visit, and I can ask more of my relations about it. Looked on the
          websites and I found the following links:

          http://www.whonamedit.com/synd.cfm/1837.html

          In addition, the rarediseases.org site offers an aide�s syndrome
          packet for $7.50, I�m thinking about getting it, and if I do, I will
          let you know if it�s worth buying. Since I live in Boston, there are
          many medical schools in the area that I can try to do more research.
          There is really nothing online to tell me about Aide�s syndrome and
          others like it.


          take care
          -nese


          =====


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        • MStafford@Prodigy.net
          Hi all, I ve read this condition was hereditary, but close relatives do not seem to have it. I would guess it s extremely recessive. My Mom has glacoma
          Message 4 of 4 , Apr 4, 2002
            Hi all,
            I've read this condition was hereditary, but close relatives do not seem
            to have it. I would guess it's extremely recessive.
            My Mom has glacoma problems (age 79) it was then I noticed one of her
            pupils was slightly larger than the other. She however blames that on an eye
            injury when she was younger. She remembers the doctors telling her she was
            lucky she didn't loose her eye.
            I just thought of this as I was reading the e-mails. If this syndrome
            is heretitary, could it be possible that any of us here would be distantly
            related?
            That would be a HOOT!
            Margo
            ----- Original Message -----
            From: Nese Myles <nese_myles@...>
            To: <adie_syndrome@yahoogroups.com>
            Sent: Wednesday, April 03, 2002 5:34 PM
            Subject: Re: [adie_syndrome] Hi, I've been recently diagnosed with Aide's
            pupil


            Hi all,

            Just to let everyone know I am in Boston, Massachusetts, USA. I am
            26 years old. I was diagnosed almost a month ago with Aide's
            syndrome.

            So far the symptoms that I noticed in my eyes, besides my left pupil
            being dilated more than the other, that I sometimes have double or
            blurred vision, and sensitivity to sunlight. When I come indoors
            from bright sunny days, I cannot see out of my left eye and sometimes
            I see yellow spots. When my neuro-opthomologist shined the lights
            into my left eye, it was incredibly painful. My peripheral vision
            has increased dramatically too. I can see my computer monitor
            flickering as it refreshes. At night, the streetlights are very
            bright too, and it seems like I am always squinting. I also started
            suffering from migraines, especially on the left side of my face. I
            have been sweating a lot lately too, especially on my back,
            shoulders, and face, but I do not sweat on my forearms.

            As for my research so far, I have asked my Mom and my cousins on my
            Mom's side of the family, and nothing yet. I am going home to Arizona
            to visit, and I can ask more of my relations about it. Looked on the
            websites and I found the following links:

            http://www.whonamedit.com/synd.cfm/1837.html

            In addition, the rarediseases.org site offers an aide's syndrome
            packet for $7.50, I'm thinking about getting it, and if I do, I will
            let you know if it's worth buying. Since I live in Boston, there are
            many medical schools in the area that I can try to do more research.
            There is really nothing online to tell me about Aide's syndrome and
            others like it.


            take care
            -nese


            =====


            __________________________________________________
            Do You Yahoo!?
            Yahoo! Tax Center - online filing with TurboTax
            http://taxes.yahoo.com/




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