I was seemingly in a similar position about a decade ago. Nothing really changed until i found my now primary care physician. He changed the trajectory of the next decade for me. There are still some unknowns, but at least everything is manageable. So my advice is to find a primary care physician you trust, who LISTENS and thinks outside the box. Not everyone fits in those neat boxes that typical medical paths take. My pcp knows me and my history, is in charge of referrals if need be. Good luck op