Re: new dx - ck levels

I have had dm for at least 2.5 years. I went to GP in oct 2005 with fatigue, sore hands and an eye orbital rash. Saw rheum first in nov 05. Did an emg, blood work, all was perfectly healthy. Meanwhile my nail beds were inflamming, knuckles inflammed, eye rash was getting really bad. Derm diagnosed dm based on knuckle biosy, rheum diagnosed as skin only dm. I wasn't convinced. I was getting weaker, sore climbing stairs, shampooing hair, felt stiff every morning etc. In feb 06 I wrote a two page letter on why I didn't agree with the diagnosis and regardless of my blood tests and ivig it's in the muscles. (I had done some reading indicating that although this is rare, it does happen). I was 30 at the time.

I requested a quad muscle biopsy and a repeat emg. emg came back fine again. Great. The muscle biopsy came back flaming positive specifically for dm. THat's when my rheum went for ivig.

I still do not have an elevated ck level at all, I get regular blood work done and nothing ever changes on it. I am no 32 and although like everyone else here, it's hard, but getting an actual diagnosis did do wonders for me mentally. YOu have to trust your instincts and at times be your own advocate. Annoying, but if you have to be pushy with tests, go for it. My two page letter was polite, but insistant. It did take four months from the time I wrote the complaint letter to the time I actually got tested. From the first GP appointment to my full (sking and muscle) diagnosis was 10 months.