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.

Dear David,

Nice to see your presence here, although as you and I know, it would great to be able to move on entirely.

I'm very ambivalent about a center. I recently applied to, and was accepted to the Cleveland Clinic (did you know you have to apply? Unfortunately no fellowships). My insurance will cover 80% (that's the first application hurdle....they contact your insurance). Then I figure it will cost several thousand dollars. So I'm mulling over whether it would be worth it. I'm not sure. I just would like one great neurologist to quarterback.

So, for now I'm seeing Glenntag' s neuro, who doesn't take my insurance, to see where that goes. He's thorough, but I wish he was a more creative thinker. I did get him to agree to test for cytokines, but he only tested for one....negative. Next up is a lumbar puncture....to see if it can shed light on a so far undetected AI issue.

Yet, you seem to be a better candidate than I for a more multidisciplinary approach, based on your other issues. Perhaps you can arrange to see En Bloc's doctor at Hopkins (Julius Birnbaum) and have his office suggest a gastroenterologist while you are there? It may be good to be assured you are seeing one excellent doc who happens to cross disciplines, and add another, rather than seeing a group of unknowns.

Just a thought.

(PS..I've also abandoned the MCAS route....testing is too tricky and treatment too vague...and I just don't think I have enough symptoms.)

I'm eager to see what others say and what you decide...

Best,
S

What kind of tests and why for cytokines?

Hi David,
Everything you said.....is what I think.
I'm just so afraid after all these doctors that it will be another dead end.
I am still hopeful for healing though.
I still feel that this was an environmental exposure and that it caused terrible havoc and imbalance of my gut and metabolic state that lead to major confusion of my cells.

The same company that I did my Lyme testing through, does offer a variety of cytokine testing.

Test, don't guess

Cytokine Basic + LPS

Hi Health girl,

Cytokines are signaling proteins found throughout our bodies. When regulated, they direct a necessary immuno/inflammatory response. When deregulated, they can cause inflammation. Deregulated cytokines can cause neuro-inflammation and have been implicated in SFN, depression, MS...etc. if you Google "neuropathy," and "cytokines," you can find a bunch of articles.

I would attach ..but I'm on my unresponsive reader. Some articles have reported good results with the biologic infliximimab...even reporting healing as well as halting progression. I asked my neurologist to test me, but he only did for one... interleukin 6.

I'm having a lumbar puncture next week and asked to be tested for the gamut. We'll
see. (I feel my requests don't make him happy.)

Madisongrrl...my hospital does the tests....if I can get my neurologist to order them!
Does the lab you mentioned take insurance?

It usually comes down to your insurance - they decide lab test coverage.


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"the biologic infliximimab"

Infliximab is a humanised monoclonal antibody which blocks the action of TNF, which is a pro-inflammatory cytokine. It has been used in treatment of a number of conditions (both autoimmune and otherwise) with an inflammatory component.

I would be cautious about it (or other biologics which block the action of TNF) in the context of peripheral neuropathy because "Peripheral neuropathy was the most common neurological [adverse effect with these biologics...]".

Source; Neurological events with tumour necrosis factor alpha inhibitors reported to the Food and Drug Administration Adverse Event Reporting System. - PubMed - NCBI.

All Medical Centers connected with a large research university have a much wider and deeper level of expertise than any single physician or even group practice.

I am fortunate to have both Duke Medical Center and the University of North Carolina Medical Center within 20 miles of my house.

University of Iowa Medical Center in Iowa City, for example, would be a good choice for those in Iowa.

The important factor is sophistication and access to the latest research and tests.

Hugs, ElaineD

Thank you to those who offered some suggestions. SilvieM, thank you. I was hoping for some more specific recommendations and experiences with details, if anyone out there has visited any of these places. But yes, I think I'll PM Glenntaj and En Bloc, both of whom I know have specifics and knowledge on this issue. Also, I'll be contacting Dr. Oaklander to see if she'll see me and can do so in such a way as to run a bunch of tests and have a rheumy see me too while I'm there, so whether she can offer a multidisciplinary approach too. But if she herself can see me and run a bunch of tests including some that I can't get here, then it might be worth (what I imagine would be) an expensive trip to Boston.