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So far I have stayed local with my drs. My primary wanted to send me to Mayo Clinic in Rochester several months ago. However I felt the local drs had not done everything they could do for me so I requested a second opinion by another local rheumatologist. She seems very on top of it and is wanting to help get to the bottom of all this but she is now sending me back to the neurologist (who refused to do any further testing the first time around). I feel like I’m stuck in this loop of going back in forth between the rheumatologist and the neurologist with no answers for anything.

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Replies to "So far I have stayed local with my drs. My primary wanted to send me to..."

@amberlynne5 have you decided to go to a university med center? Your rheumatologist can write a referral. Being a human ping pong ball won’t help! Keep in touch, we care.

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.