Hirayama's Disease

[wastingaway]

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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[LawAlucard]

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.

[qwerta]

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

[email protected]
Page Not Found | Facebook

I want to share info with you thanks

[BlakeTaylor]

Hello everybody my name is Blake I’m from Ontario Canada I have lived with this since I was 15 it was mainly in my left hand gives that claw effect but I can still lift a lot with that hand I lose grip fairly fast but I’m 28 now I’m thinking it might be spreading to other hand up to this point I have done good but recently I have had a lot of anxiety about it never wore collar or seen specialist after I was diagnosed at 15 but I always stayed very athletic my question for someone who may no im thinking about taking steroids to see what effects may happen also Germany is huge into stem cell research I question if some how this could help but I’m going to fight this in my right side just wondering if anybody would no what would happen if I did try steroids or would I be the first to attempt just got excepted for teaching at York university don’t want this to take over my mind this has been on my mind now for a month straight thank god fo this forum because I was starting to get very scared I never really new it could spread witch does suck I hate the tremors but as terrible as this sounds it totally could be worst I started looking up als and that is scared the heck out of me because of my right hand I would really like to no if anybody else done steroids to see what would happen even if it brought back mass or stopped muscle wasting in the right hand

[Deepraj031]

I'm Also suffering from hirayama

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I want to talk to you I'm also surfing from this hirayama

[Aakash99]

I am also suffering from this disease since 2015.....you can talk to me by mailing ([email protected])

[HandyMom]

Hi! Are any members still active?

My son (16) has recently been diagnosed with HD and I’m interested to find out more from others about their journey.