Hirayama's Disease

[Kath Webb]

I am a 60 year old female who has just been diagnosed with Hirayama's disease (although for the past 3 years they have been calling it monomelic spinal atrophy). I have wasting in the left hand and arm but with exercise am beginning to build muscle up again.

The main point of this note though is to ask if there are any other women out there with this. It appears to be male orientated (and much younger as well) and I cannot believe I am the only woman!

[drumett]

My daughter was diagnosed with this illness 2 months ago. She was 13. It's a long story starting when she was 5. She had a back pain; which thinking now, it is possible that it was her neck and not back. She lost mobilization in both hands, arms and legs were weak. After 3 days, she began to gain movement back starting in her fingers. Long story short...she realized 3 years ago that her left hand was smaller than her right. Her left thumb began to 'jump' uncontrollably. We started with dr's again to find out that all of her left side has muscle atrophy. About a year ago now, her right fingers began to jump and then both her hands and arms. I don't think it's as bad now. The dr is trying to figure out why her left leg and foot also has atrophy since it doesn't go with hirayama illness.

I am a 60 year old female who has just been diagnosed with Hirayama's disease (although for the past 3 years they have been calling it monomelic spinal atrophy). I have wasting in the left hand and arm but with exercise am beginning to build muscle up again.

The main point of this note though is to ask if there are any other women out there with this. It appears to be male orientated (and much younger as well) and I cannot believe I am the only woman!

[Hope_1996]

Hey guys and hello Kath Webb!
I'm a 16 year old GIRL from Germany and I've been diagnosted with Hirayama 2-3 months ago.

It's 3 weeks after my surgery now and I'm trying to live with that stupid neck brace I've got to wear. Does anyone have advice for me? Showering and writing etc is pretty hard ( I still go to school). And of course I'm trying to deal with the fact that my hand will surely not be getting better....

I've had problems with my left hand and arm for about a year now. Earlier I only had problems in winter or when my hands were cold. But then my muscles startet to waste away and I could not correctly use my left hand anymore. I went to a lot of doctors and nobody knew..... ( I think you know what I mean )
I first had to wear a neck brace, than I had a surgery and now I've got to wear another neck brace for 3 months. After this I should be able to live without one and do sports like everyone else. My hand should not be getting worse anymore but the doctors don't think it will get better either . Nevertheless I've got to do a lot off physiotherapy to try to improve my strenght and hand coordination.

Kath Webb, you're not alone!

I am so happy I found this forum