Dear Snowmass: I am so sorry to hear about your distress. If this is a sudden onset, there has to be something you are doing or taking that may be the culprit. But, I know you are diligently enlisting your drs to find the cause/s.
One thing I would strongly consider is seeing a holistic nutritionist. Your diet may play a part in all of this. There may be certain foods that are responsible for aggravating or causing some of your health problems. It certainly is worth a try. Good luck to you.