Back from the land of fancy rheumatologists (or, Derrie went to a teaching hospital)
I'm back from my trip to the teaching hospital. (And back on Plaquenil as of last night, hallelujah.)
I think it was worth it, though I did not get a definitive diagnosis, which I expected. The learned rheumatologists who have seen it all said that they had "never seen anything quite like this," but that it was definitely autoimmune. They did one test called a nailfold capillaroscopy, which proved interesting because my nailfold capillaries are abnormal, which is apparently most often present in scleroderma (aka systemic sclerosis) and with secondary Raynaud's phenomenon, neither of which I have. It's also seen in SLE, Sjogren's, and dermato- and polymyositis.
So, based on the nailfold capillaries and everything else (rash, oral ulcers, leg pain, tingling in hands), they think I definitely have a systemic autoimmune disease, they just don't know what. One idea that was suggested because I have regularly-occurring (at least every couple of months) painful oral ulcers and neurological symptoms that I might have Behcet's Disease, which pretty much scared the bejeezes out of me because that disease, especially with neuro involvement, can get pretty ugly. But just as there is a chance that what I have will progress into a more serious and more defined disease, there's a chance that everything will stay where it is and never get worse.
But for now, I'm focusing on the fact that I have a plan for follow-ups and we at least have a category for my disease and very smart researchers who are following my case.
And to that one rheumatologist who six months ago said he didn't think there was anything rheumatological wrong with me: I TOLD YOU SO.
(( tl;dr version: Going to the teaching hospital was helpful, and I have an unidentified autoimmune disease for sure. ))