has anyone heard of polymyositis?

[runner no more]

I have a few more weeks until my neuro appointment. Last week I was having a terrible time. My energy was bottomed out and my legs was/are so spasmy. My body now twitches so much that sleeping is almost impossible. So I went to my regular doctor and asked her to please do a full blood work up. I was convinced that I needed vit d or b or something.

She called yesterday and said that JO-1 anitbody was unusually high and this is indicative of polymyositis. She isn't familiar with this except that it is an autoimmune issue in which the body attacks its own muscles. She is making an appointment with a rheumatologist but wants me to keep my appointment with the neurologist.

Of course I looked it up on google. The first few pages scared me to death. But then I read some promising information that it can be treated and some people actually go into a type of remission and never get it again.

Has anyone else out there heard of this? Any encouraging words? Of course I do not have an official diagnosis, but my primary felt that it would be very unusual to have this antibody without polymyositis.

[Jennagain]

I have a first cousin (male) who was diagnosed with it when he was only 3 or 4 years old. At the time his parents were told it was very rare in children and they were guarded about the prognosis. I believe he was on Prednisone most of his childhood and did well. He is now in his 20's and I believe he has been in remission many years.

Strangely enough my grandmother (same side) was diagnosed with Polymyalgia Rheumatica right after this. It's also autoimmune and a similar muscle disease, except that it affects seniors. Doctors told her there was likely some type of genetic link.

[runner no more]

I have a first cousin (male) who was diagnosed with it when he was only 3 or 4 years old. At the time his parents were told it was very rare in children and they were guarded about the prognosis. I believe he was on Prednisone most of his childhood and did well. He is now in his 20's and I believe he has been in remission many years.

Strangely enough my grandmother (same side) was diagnosed with Polymyalgia Rheumatica right after this. It's also autoimmune and a similar muscle disease, except that it affects seniors. Doctors told her there was likely some type of genetic link.

Thanks for the information. I really don't believe that my particular case is too severe. I can still run, although I get tired very quickly. I guess in the Russian roulette of random weird things, maybe I got lucky.