Re: how many self-diagnosed first?
Kayte, I should have stated clearly earlier that my new rheumie performed all the expected tests all over again & then some. AND he sent me to a dermatopathologist (a dermie who is also a board-certified pathologist) to do another skin biopsy and to review all the OLD skin biopsies as well.
i.e., my paltry "knowledge" & pretty good instincts didn't take me very far on my own---just to the doorstep of a really good rheumie, one affiliated with a teaching hospital. And he's helped me tremendously.
How to find a good rheumie? Good question! If you hit it off with your new GP, maybe you'll trust the referral you get enough to try it & see. I hope so. Otherwise, maybe nearby teaching hospitals or direct word-of-mouth from other rheumatology patients?
I hope you make progress & soon. I commuted by train & subway for many years in a daze, so I understand how fatigue can devastate. Best wishes & HANG TOUGH. Take good care, Vee