Visiting a Medical Center (Mayo, JHU, etc.)
 

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: http://www.neurotalk.org/peripheral-...c-gone-pn.html. 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.

I'm in few different neuropathy groups. Mayo clinic does not have stellar reviews for diagnosing SFN. Many people have felt dismissed or told that it was all in their head. I have not heard positive or negative reviews in terms of Mayo finding the cause of SFN.

Hopkins or Cornell-Weill seem to have positive reviews on this website.

I spent a week at Rochester Mayo --- there should be threads on here discussing it. Are you looking for any specific info, such as tests done, pn drs, places to stay??

Thanks. I read your brief post on the thread that I linked to in my initial post on this thread. I'm not sure if there's anything else on some other thread. I guess I'm most interested in your experience, the kinds of physicians you saw, the test they ran, and the results. My goal, if I were to go, would not be to repeat the many tests I've had done, but rather to run some perhaps rare tests not available here and to push toward a diagnosis of the cause, so etiology of the SFN rather than diagnosis of the SFN itself, which has already been done and is itself a symptom of a larger or prior disease process. Thank you.

I also spent a week there.

You have NO choice...they WILL repeat ALL your testing. The doctors are arrogant and unless you have very clear positive results to specific tests that fit their criteria, you will be brushed off as many here (myself included) have reported. They made my dysautonomia Dx, but completely missed my Sjogren's, APS, etc...because they refused to do a lip biopsy and other testing (since my SjS labs were negative). They said my autoimmune symptoms were all in my head (exact words)...then I had my first of three strokes after their missed Dx.

They have EXCELLENT logistics and organization, along with access to great testing. But the doctors are not great.

Thank you for your input. Much appreciated.

That's so sad how they just dismissed your autonomic symptoms. I'm sorry about that. I wish we lived in a world where physicians were held accountable for such incompetence. As the recent JHU study showed, such incompetence or general medical error is the third leading cause of death.

I didn't know you had three strokes. Wow! I didn't know one can have so many strokes! I'm sorry to hear this. Is this a risk with SFN? Should I be concerned? I have autonomic dysfunction as you know and didn't think much of it aside from the nusance that it is, that we have to live with, but now I'm thinking it can be more serious. I mean, I have palpitations and blood pressure issues, sweating issues, and the like, but I didn't think it could be deadly without getting much worse first. Perhaps I have a milder form of autonomic dysfunction now. It was worse it this all started and I hadn't regulated my diet and the like.

That's an unfortunate dichotomy between excellent testing and poor physicians. At this point perhaps my best bet is to see if Dr. Oaklander will see me. Presumably she can run all the tests she wants in Boston and send away for any that they can't do in house. If I had to choose, I'd say having the right physician is more important.

I know you've also visited Johns Hopkins. How was that? Or did you just see the rheumatologist there, and so didn't have the experience of having an overall assessment with a team of physicians and battery of tests? Any SFN experts there, or at least good, so open and inquisitive neurologists?

Johns Hopkins is excellent...I highly recommend them.

I also hear that Cleveland Clinic is great.

I saw Dr. Dyck at Mayo. If you have already had a good work up, then most of the tests will probably be a repeat. The only good thing about it is the way they get everything done in a week---so for people with no diagnosis or access to get one in their area it is probably helpful.
I did not get any tests run there that I didn't have or couldn't have got from my own Dr in Ma. Our own doctors and hospitals could run any test mayo can--they might just have to send it out and it may take a little longer for results.
My own doctor thought Dr Dyck might have some insight on what was causing my peripheral neuropathy because of the voltage gated potassium antibody she discovered---like you I was looking for the underlying cause of the neuropathy, not just being told I have it.
He only told me "it was interesting" and told me I should continue with IVIG.
I did not learn anything from Mayo or Dr. Dyck that I didn't already know before I got there. They did do a sural nerve biopsy and a lumbar puncture at mayo which I had not had done before going.
Later on when deciding to try rituxin, my doctor in MA wanted to confer with Dr Dyck, he refused to give any imput over the phone, stating I needed to come back out there for advice-----even though my insurance company payed dearly for my visit, he had access all of the tests they had run on me and all of my medical history.
There is a lot of money in the testing and diagnosing --that is what mayo does, they are not there for you after though, unless you live there and they are your regular doctor

And one other thing, a bit off-topic--
 

--but relevant given what enbloc talks about.

Many who suffer from stroke, especially of the spinothalamic tracts, may wind up with a condition known as central pain syndrome, also known as Dejerine–Roussy syndrome or thalamic pain syndrome.


In this condition, damage to the sensory processing center in those central nervous system tracts can cause an intractable pain syndrome in many parts of the body that feels very much lie the severe neural pain of small-fiber neuropathy--burning, shooting, electrical.

Stroke is the most common cause of this syndrome--and often, in stroke, the syndrome produces unilateral symptoms, depending on the side the stroke occurs on--but this can also be caused by multiple sclerosis (in fact, it is thought to be the main neural pain generator in those MS patients with neural pain), subacute degeneration from B12 deficiency, infectious inflammation of the area, epilepsy, trauma, or even sometimes Parkinson's.

The prevalence of the condition is disputed--many think it is rather underdiagnosed--but it is still something to look into if one has had any of these occurrences.

There are a number of sites to look at about this, but here's a good start:

Central Pain Syndrome Foundation << You Are Not Alone

thank you for taking the time to relate your experiences at Mayo Clinic. This type of information is invaluable for those trying to determine
their own course of action.

I seemed to have missed this. I only noticed your post yesterday. Thank you for sharing your experience. I was told by my neuro to see Dr. Dyck, if I do go. I think I'll hold off for now and keep getting tests here. I'm sure they could run some tests that they can't here, but I don't think they'll yield anything. However, I do think I'll eventually find my way there. Unfortunately I'm too busy this summer, but if I have insurance next year too, I think I'll find some time in the spring or next summer. For now I'll do what I can here since I'm not too keen on paying thousands (insurance isn't 100%) for tests I've already had done. My neuro did say he would make a list of all the tests I've already had here, but perhaps they'd repeat it anyway. It seems likely from what you say.

Can I ask, was Dr Dyck open minded in conversation? Was he willing to consider various options, to think outside the box and such things when it came to the possible cause?

And were you able to see other specialists? What if, say, I wanted to also see a rheumatologist? Would that be possible during that week?

Thanks again.

That's quite interesting. Thank you for sharing that.