I was diagnosed in 2004 with PPMS, after 4 years of severe fatigue/depression, and ruling out all the other usual suspects. It took 3 neurologists, 2 weeks and multiple tests for the DX, but they were confident enough in it at that point to enroll me in a two-and-a-half year drug study.
Now on a routine annual check-up at the same center, a neurologist that has been there all along but never seen me before, declared I don't have PPMS because I haven't gotten worse and I "should be in a wheelchair by now." I pointed out that I was, in fact, worse, but he said not by "objective" criteria (what is the objective measure for pain?).
So I made an appointment with the head of the MS section (who was in on the original DX) for a second opinion, but the appointment was canceled and they refuse to reschedule, told me I would have to go elsewhere for the second opinion.
So the purpose of this post (besides venting) is to ask: Where to now? I have been going to Dartmouth-Hitchcock Medical Center in NH, which is supposed to be the best in the area. My PCP suggested Boston, but didn't have a specific place to recommend. I have been to the MS Consortium website, but there are a lot of choices.
I had heard that the Comprehensive centers were, well, more comprehensive, but I can't find any specific criteria they have to meet. Are they really any different, or can anyone add "comprehensive" to their name?
Specific recommendations or experiences welcome, and thanks for any help.