I've been meaning to post this for a while now, but going back to work and trying to focus more on living and less on my illness (with mixed success) has kept me busy.

My whole body SFN and whatever disease process is causing it is progressing (e.g., tingling, numbness, tightness, creepy crawlers, sharp pains, sweating and even fasciculations). I won't get into the rest of specifics, but it's clear that it is. My physicians still don't know what the etiology is. The rheumatologist couldn't figure it out and testing showed nothing. He did every test except a lip biopsy for Sjogren's, which didn't seem necessary (at least to him) since all other tests were negative. I will see my neurologist in June again to reassess what has happened and where to go from here. That's several months after the initial appointment, and a few months after I saw the rheumatologist back in March or around then. The process is slow, and meanwhile the disease process continues downward. It all amounts to frustration on my part.

It's not as if I haven't had all sorts of heavy metal testing (normal serum testing), viral, and whatever else you can think of that's relevant to my situation. But there are some things left to do, including checking for some minerals and H. Pylori, among others. But I need more attention and to not have to wait months before seeing my physicians and specialists. So, at my appointment in about a month, I plan to speak with my neurologist and reopen the option of going to a medical center to see a team of physicians. He had actually mentioned this beforehand at our last/initial appointment. But I don't need to wait till then and can contact places before then and make arrangements.

So I'm basically writing asking you all what advice you may have. In particular, those of you who have visited some major center, I would very much appreciate your input/experience. I was thinking of Mayo, but then read this, which confirmed some of my worries: MAYO Clinic: Anybody gone for PN?. Not that I'm rulling out Mayo. But I don't want to spend thousands I barely have to get nowhere and deal with a bunch of arrogant and myopic physicians. How about Johns Hopkins (JHU)? Anyone been there? How was your experience? And then there's Chicago and others. I've heard Glenn speak about this. En Bloc has spoken positively about JHU. Any recommendations for specific specialists at such centers with whom you've had a good experience would also be appreciated.

I would ideally like to do this in the summer, July preferably. What I'd like is a workup and to figure this out. I would need a team to work together. And I would definitely need to go somewhere where I could be seen my a neurologist and a rheumatologist. Perhaps even my a GI, given that my SFN and disease seem to be gut mediated.

I would be going from outside the country, though I do have US insurance for a while longer, otherwise I wouldn't be going. So I would have to go somewhere where they could do everything in a well arranged and scheduled way and not to keep me there more than a few days (max a week I imagine), given the expense. Again, any thoughts, ideas, specifics, etc. would be very much appreciated.

Perhaps nothing will come of all this, perhaps I just have a gut problems and none of them will be able to do anything. But I must try something.

I should say that perhaps I will at least have a more thorough skin biopsy and rheumatological workup, perhaps even a lip biopsy. Perhaps that's worth it. What I really want are open minded specialists who will work to get to the bottom of what's happening to me.

Thank you all in advance.