Hello j77, I'm so sorry to hear of all of the challenges you have endured. I have had some similar symptoms as you and was just recently diagnosed with Celiac Disease, though I had no GI symptoms. They test for this first with blood work (auto-antibody testing) and then finally with an endoscopy and biopsy of the small intestine. I had suffered with many muscular and neurological symptoms for the past twelve years (including bouts of paralysis) and seen many neurologists, rheumatologists, etc. Finally during a hospital visit a hospitalist physician threw in a Celiac panel for kicks (and I eventually got to see a GI specialist who confirmed that I have Celiac Disease). CD can act like so many different diseases and has over 200 symptoms. Just throwing that out there in case you have not been tested for that. Again, I'm so sorry for all that you are going through and hope that you find answers soon!