Drumroll…
Yes I have dermatomyositis!
Only someone else who also spent several months thinking they had muscular dystrophy can appreciate just how exciting that is.
When I first went to the specialist he almost immediately thought it was dermatomyositis because he could see the redness on my hands that I had hardly noticed, and he sent of blood work to confirm that my immune system is producing antibodies correlated to dermatomyositis. He was almost positive that’s what it was but they also wanted to have a muscle biopsy to confirm that before he started me on the steroids which could change the results of the biopsy. Unfortunately even getting me in as quickly as possible meant waiting a week and a half for the biopsy, during which time I got weaker by leaps and bounds, or more like shuffles and whimpers.
But now the results are in, both blood work and biopsy, and the biopsy showed clear dermatomyositis while the antibody in the blood work (MI-2 is the culprit) was not super strong. I consider this good news on two counts: it was worth waiting for the biopsy because otherwise they would have had inconclusive results and would want a bunch of other tests, and also the antibody isn’t being that strongly produced in the first place! So maybe my body is just strong and strongly responding to the antibody? Now if I can just turn that one little thing off…
Not to mention the big big good news: It really is dermatomyositis!! Again, one can only appreciate how nice that sounds if they’ve spent months thinking their condition was muscular dystrophy, wheelchairs and death.
