Re: Re: Re: Remission?

This post could be a repeat of Bill's with a couple of differences. For what ever it is worth I have DM and was diagnosed in 2000 and did not have as much muscle damage initially as Bill. A couple of major flairs and some other stuff have me in about the same boat, now. The only thing more important than reasonable exercise is attitude. It is difficult, at best, to come to terms with muscle loss and corresponding lifestyle changes. There are a few that say it is the same five steps you go through with a death. The most problematic for me is acceptance ....I always want to do more.

I would suggest you look up treatable. I my book it means you stop the disease progression .....that is a long way from cure and recovery. Also I read somewhere that something like 5% die from myositis, 60% halt the progression with drugs, and the remaining 25% get remission for some period of time. I am in the 60%. One thing about my DM is compliments of prednisone my CPK has not ben over 100 in years. I have had a couple of major flares (due to changing drugs) but my CPK remains low. In other words do not use it as a guide to disease activity. My rheumatologist had a hard time with this until I lost 10 pounds in a week. He really changed his tune then event hough he has never totally relied on test numbers.

Needless to say I would make a appointment and tell the doctor how you feel. One other thing, a doctor hears the same complaint from different patients and things can blurr together. It can help to use different words to describe how you feel. My DM shows up first in my finger nail beds (Grotten papules). I was surprised at the reaction I got when I said that my fingers were so pissed off that I couldn't give someone the finger. That was over four years ago and he still comments on it.