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Profile picture for petermccarville @petermccarville

Great list but had the humorous (dark, dystopian) thought that by the time you might be able to see one of these experts the disease would be over on its own or via prednisone. What I take from this is that it is great that there are some international experts who are researching this disease but I would never think I could ever see one of them. Living in the US has jaded me.

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Replies to "Great list but had the humorous (dark, dystopian) thought that by the time you might be..."

@petermccarville

I have never had any reason to see a "PMR expert" in rheumatology. I felt the same way when someone strongly recommended that I see an endocrinologist who specialized in adrenal insufficiency. In the case, of adrenal insufficiency, my overwhelming fatigue made it impossible.

I have only seen "run of the mill" rheumatologists and endocrinologists who were very capable at treating PMR and adrenal insufficiency. The key was that I had easy access to them when I needed them. Access is more important than consulting someone hundreds of miles away or someone you need to wait months to see.

I was blessed to have access to doctors who responded to me in a reasonable amount of time. When they deemed it to be something serious, the question was always, "How soon could I come in to be seen?" I didn't ask my doctor the question ... they asked me that question.