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  1. #1
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    Hirayama's Disease

    i've recently been diagnosed with Hirayama's Disease and am working on getting my insurance to approve the rest of the appointments i need before surgery..the doctors still want to do one more test before the surgery to make sure it is indeed Hirayama's Disease...i have been trying to get this solved for a year now, longer if you count when i first went to my family doctor about it and he told me it was normal..my hands have slowly been wasting away on me, my left more so than my right. i still have a decent amount of grip in my right hand, but my left hand is that of a small child's. however i am starting to notice my right hand beginning to waste away too. let me tell you, you never realize how important your hands are in everyday life until you cant do things that you use to be able to...

    the surgery that my surgeon talked about was more or less to rotor router my spinal cavity in my neck to make room for everything. i was just wondering if anyone has ever had this surgery and if they were ever able to recover their grip and hand functions, my doctors would not give me a straight answer when i asked them. i think they are afraid to incase of a lawsuite, but all i want is hope...i am only 18 years old am quite nervous about the surgery and life after the surgery...i was hoping to be a pilot in the air force but i am afraid with my grip the way it is now there is little chance of that happening. if anyone could give me insight that would be great! thanks

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    Hirayama's Disease


  3. #51
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    Re: Hirayama's Disease

    Physical Agents In Rehabilitation
    Hey Guys,
    I'm a law student who was, diagnosed with Hirayama's Disease when I was 19. I'm 21 now, I wear a neck collar and I exercise frequently. Hirayama's Disease affected my life to a major extent, I was a basketball player and I used to play the guitar. Now all I can do is write or type, but that too is slowly being affected. I'm looking for other people with the same disease who have lived with this and have over come the drastic changes that it entails. I feel that considering the fact that there's no awareness about Hirayama's, we should have a community or at least a Facebook group wherein we can contact and share information along with the mental support and hope that it'll bring.


  4. #52
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    Re: Hirayama's Disease

    Quote Originally Posted by LawAlucard View Post
    Hey Guys,
    I'm a law student who was, diagnosed with Hirayama's Disease when I was 19. I'm 21 now, I wear a neck collar and I exercise frequently. Hirayama's Disease affected my life to a major extent, I was a basketball player and I used to play the guitar. Now all I can do is write or type, but that too is slowly being affected. I'm looking for other people with the same disease who have lived with this and have over come the drastic changes that it entails. I feel that considering the fact that there's no awareness about Hirayama's, we should have a community or at least a Facebook group wherein we can contact and share information along with the mental support and hope that it'll bring.

    Hey there i have symptoms as yours and same age and things u may contact me

    Flutramuciqiii@gmail.com
    Page Not Found | Facebook

    I want to share info with you thanks



 
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