@ddfinn - I'm just joining in on this chat and I don't have time to read all the previous posts so please forgive me if I'm repeating things or come across as ignorant (because I am regarding your situation). It sounds like it might be worth getting a second opinion from another rheumatologist, maybe from a teaching hospital if there is one close by to you. I know I could have diagnosed my daughter with many forms of arthritis when she was younger but had to rely on the expertise of her physician who was used to seeing arthritis much more than I (obviously my daughter having issues starting at age 6 was my introduction). I would go to her appointments with a list of questions that basically questioned her diagnosis and she very calmly answered them all to my satisfaction. Sometimes I was dubious but time, or further research, usually indicated that she was right. If I was not content I certainly would have sought out a second opinion. It is my understanding that rheumatologists must rely more on patient history and examination vs. blood work to get their diagnosis. For example, my daughter was in such a flare that she was in a wheelchair but she never tested positive for an elevated c-reactive protein that is usually present when there is inflammation yet clearly her joints were swollen and her pain so extreme she was in a wheelchair.

Lynn