If anyone has input they think might help, or just want to talk about this condition, please do. I have my 1st appointment Tuesday to get the official diagnosis. It's not hereditary. They said maybe a chemical you inhaled or ingested causes it, maybe. They are studying it thanks to a half million dollar donation by someone named Jack Miller.
Some people get worse and others it stops progressing.
I doesn't kill you, just hurts and makes you angry. I was unconsious for several weeks, I had a near total renal shutdown. I don't know. I think I would be willing to try about anything that might. Im really a mess right now.