In Reply to: Re: Suspected neuromuscular disease in 11 yr. old boy - Need info. posted by Sarah on May 31, 2000 at 23:19:48:

I have a nephew with a condition that has affected him since he was about 11 or so. His gait gradually got worse until finally he was in a wheelchair. That had a difficult time diagnosing his condition. Finally, doctors have told him he has Fredrichs Ataxia, a form of muscular distrophy. He is 18 years old now and spends most his time in a wheelchair. This is probably not what your son is suffering from, I only mention it because it sounds similar and my nephew doctors, some of the best in Seattle, had such a time figuring out what he had. Which sounds like what you are going through.
I wish you and your son the best, and that they find a cure for his condition soon.