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.