How incredibly frustrating! And mind-boggling.

Yes, it’s neurological. Your symptoms are. But why?
The million dollar question, I know.

Interesting that you have thyroid disease (I do too), a family history of lupus and a positive ANA. Did you get any other autoantibody work done? How about autoimmune muscle diseases like dermatomyositis? Has that ever been mentioned?

This puzzle must be solved. You need answers. Even if there’s not much doctors can do, just knowing what’s wrong can be comforting in a way. Like you, my symptoms have not improved, only stabilized, but knowing that the cause is autoimmune came as a great relief. (The differential included paraneoplastic syndrome—ie, cancer). So, re: your situation: big guns may be needed. Start with a neuro at NIH or wherever you said the closest academic medical center is.

I also used to work in healthcare, so, yeah, you see an awful lot of horrible sheeyut, but you never think about it happening to you. That’s how you survive in such an environment, I suppose. I got the hell out. lol. That’s how I survived.

Anyhoo, take care, my fellow neuro friend.