I have PMR, but I was stuck in the loop you are in for a long, long time. Your post has elicited some wonderful advice. I can only tell you what worked for me. After consulting four rheumatologists, three orthopedists, and my PCP, I referred myself to Mayo Clinic. I found that the doctor at Mayo had far more knowledge--in part because she had treated a far greater number of patients with PMR. My diagnosis had been complicated by the fact that my symptoms were atypical for PMR. The doctors I had seen prior to going to Mayo, in my opinion, knew only what they had covered in their autoimmune class--if there is such a thing. Any deviation from the typical symptoms had no meaning for them.

Whatever your disease, I suspect that your symptoms are atypical which makes a hard to diagnose disease even more difficult to diagnose.

As a member of this group, I have observed a common thread among the membership. It appears to me that the vast majority advocate becoming a strong self-advocate and engaging in extensive research. I had a good idea of what my problem was before I went to Mayo because of the research I had done. That boosted my confidence in my ability to read my body.

Never had I ever thought that I would seek treatment at an out-of-state clinic for anything. The realization my life would have no quality if I remained in the loop motivated me to begin looking at reputable medical centers that could possibly help diagnose my problem. I had to travel by air to the clinic and had to stay in a local hotel for about three or four days. It was worth every penny I invested.