Golly, I can't really give you any advice with this, but I am so sorry you've had so much to deal with. I guess the first thing that I would consider is to get to one of the top ranked teaching hospitals in the country ... i.e. Mayo Clinic, Johns Hopkins, Washington Hospital Center, and I'm sure there are others that you know about. If I were at the place where you are, I do whatever it took to get a good answer and treatment plan. I'm so sorry, and I'll be praying for you.
Abby