Need advice on managing a new medical diagnosis

I had a similar situation. It was here is your diagnosis and good luck, no advice or what doctor I need to see. So frustrating.

I get a lot of neuro symptoms so I see a neuro muscular specialist who’s really knowledgeable about EDS & POTS

I would get into an EDS-knowledgeable physical therapist if possible. PT has saved me from being completely immobile.