Thank you thank you thank you for creating this group! I feel a little less crazy knowing that I didn't just imagine there was such a thing as PMR. And I desperately need some help from the group: I can't find a doctor/nurse practitioner will even LOOK at PMR as a possibility even though I present every single symptom associated with it--and GCA. Doctors here in Tallahassee have messed me about for a year with the symptoms, mostly shuffling me off to a NP who listened, nodded, and diagnosed me with "Hm.", took my money and showed me the door. It's even to the point where I went to ER with a TIA (diagnosed after screening me for a stroke), and when I reported back to my doctor? "Hm."

My wife and I googled the list of my symptoms and PMR turned up IMMEDIATELY. When I followed the Mayo website's advice and typed out my symptoms along with the Mayo article on PMR, the nurse practitioner was livid, refused to even make eye contact with the words on the page, and proceeded to show me the door, assuring me that I needed blood tests to confirm I had "food allergies" (???)

I need help finding a way to talk to a doctor or find a doctor that has heard of this so that they'll listen to me and get this taken care of. Help!

I'm being referred to UF Shands (in-network provider), and they've already fumbled the diagnosis, now telling me thy're going to schedule me with an orthopedist for "random leg pain" (???)--who then may or may not refer me back to a rheumatologist. In the meantime, I'm dragging myself out of bed barely able to walk most days till mid-afternoon, and when I teach classes, I have to lecture using a cane. It's like I'm 61 going on 95. And every medical person I've talked to says they've never heard of PMR (and was told to "stop reading things on the internet", since clearly Mayo Clinic is "fake news" 🙂

Help!