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Thank you for your input! It makes me more concerned and raises more questions, as when I visited with my PCP the other day and she indicated that I don't have lupus, but then got a little sassy when I tried to ask her questions too and she didn't have answers. I do not expect a doctor to know everything, and would be ok if they don't know something, especially as out there as this case. I just want to know what I have specifically, prognosis, and how to manage this for the long term.

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Replies to "Thank you for your input! It makes me more concerned and raises more questions, as when..."

Definitely not acceptable. When I was first suffering from PMR, hardly able to walk, felt like my upper body was being beaten by a 2 X 4 24/7, my PCP said she thought it was PMR but she didn't have the expertise to really make the call. She did order basic rheumatology tests which showed an immune system gone wild but she also referred me to a rheumatologist and prescribed 15 mg Prednisone daily to alleviate symptoms until I could see a specialist. I had a lung nodule; in the course of investigating it, my pulmonogist referred me to an immunologist. He ran immunologic panels which indicated a severe issue with them and told me to find an oncologist. I was diagnosed with Smoldering Myeloma on top of the PMR. My first wife had Lupus, we eventually found a crackerjack rheumatologist who was able to help her (this was in the early '80s when the average life expectancy of Lupus patients was 5 years). Sorry for the long winded reply. Please follow everyone's advice, don't let your doctor treat you inadequately.