Dermatomyositis...?
I seem to be developing something new. Everything is pointing to Dermatomyositis. I am not sure what this means in terms of managing myself or what long term looks like. I am begging to see a rheumatologist, but they won't call me until thay see chart notes...and that's all covered in MCAS. I am afraid it will be a disqualifying dx, because 'MCAS isn't real'. My PCP said she is out of her depth with me. Same here, sister, same here.
Has anyone else dealt with this particular comorbidity? Do you manage it in the same way as MCAS? Have you seen a rheumatologist? What is the treatment/prognosis? I hate this thing so much, everytime I think I have found a balance, something new comes along. It is as predictable as the bus that will show up in another 15 minutes, except instead of catching it, it runs you over.