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

--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.