I am Joe, age 30, married with 2 kids. I am struggling with a condition called POTS, nerve damage from B12 deficiency and a half-assed diagnosis of EDS that I still don't understand. This is my therapy/distraction.
This was the professional diagnosis I got. This boring story starts after I took the tilt test. I was called by my doctors head nurse and was told I had POTS and I should read up on it before my next visit. So I watched a documentary on youtube which also referenced EDS. To demonstrate a symptom, the person bent their thumb down to the inside of their forearm. I wasn’t impressed. I been doing that since i was a kid. I can bend it back to the outside of my arm too. During the next visit I was given info on POTS, a prescription for the compression stockings (that i can’t wear) and was basically told to try and have a nice life. When I showed him the creepy things I could do with my hands, he said “Oh, that’s EDS. That happens, but you don’t need to worry about that.” He is under the assumption that the prolonged damage from the B12 deficiency caused the POTS and EDS, despite the fact that the POTS symptoms started long before the B12 symptoms and many EDS symptoms started long before that. I could tell him that it started around the age of 6 or 7, but he won’t return my calls. I think they’re afraid of me…
The head nurse insisted that I report my previous neurologist for negligence because his ignorance allowed the B12 deficiency to cause widespread nerve damage. She also suggested a lawsuit. This was before they knew the idiot was part of their practice. Now they don’t return calls.