Anyone with Polymyositis?
 

Hi,

I couldn't find polymyositis (PM) in the forums under Autoimmune or Neuromuscular so I thought I'd make a post in both groups.

Does any have PM? My PCP has suggested this as a possibility for me, but my neuro isn't doing his job and I don't know where to turn. I am hoping someone can tell me about PM and information on how to find a specialist.

Sincerely,
Lindie

Lindie,

If you haven't yet, check out The Myositis Association page **
There is a ton of information there as well as an online support group of very kind people who will tell you whatever you need to know or will point you in the right direction if they don't have answers.

I had a muscle biopsy about a year ago and I have it. There is not much that can be done. I was taking a very low dose of prednisone for a couple of months but it critically raised my blood pressure and blood sugar. My CPK is higher than it ever was so I have an appointment with a rheumy in November. I don't know what he is going to do.

My symptoms are transient. First I had pain in my left thigh that went away. Now I have pain in my right arm. I hear there is a specialty clinic in Rochester, NY which is not too far away from me. I guess I'll head up there if I don't get better.

Most of the time I feel fine. My doctor is upset with my elevated CPK. I don't know what harm it does if I have no pain.

Anyway, good luck.