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.


Quote Originally Posted by Kath Webb View Post
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!