Stuart
I went to the cleveland clinic after seeing a doctor at Ohio State Wexner center for several years. I was looking for answers for why I was having a range of SFN symptoms (I have now been diagnosed). The doctor was nice enough but he didn't have any new ideas for what could be done. He suggested a repeat skin biopsy among some other tests I had already had done in the columbus area. I was told by another doctor later that the Cleveland clinic is an excellent facility but not great at testing/treatment of neuropathies. They just had the same array of tests to offer. OSU actually has some of the more specialized tests including skin biopsy and QSART testing for SFN.
Hope this helps!

I flew out to the Rochester Mayo clinic and spent a week there. It was five days full of tests. I felt many of the tests were unnecessary, Extreme amounts of lab work was done that I had already had done, and really didn't need repeated. My diagnosis before all that testing "probable CIDP" my diagnosis after spending a week there, "atypical CIDP". Basically the recommendation from all the testing was to change my ivig regiman to smaller more frequent intervals----which made no difference.
After the new ivig treatment didn't work, my local neurologist called the Dr I saw at Mayo to ask his opinion regarding a different treatment. The Dr refused to give his opinion unless I flew back out there so he could see me again. This was after my insurance company paid extreme amounts of money for tons of testing.
In my opinion, if you are already working with a good neurologist who you feeling is testing you for an appropriate diagnosis then stay with him/her.The advantage to going to a place like mayo is they will schedule you for numerous tests in one week, and you will get it over with in a short time. The disadvantage, unless you live nearby and plan to stay with them, they really don't care what happens after you leave and don't follow your treatment. Their specialty is diagnosing, not treatment or follow up.

I am not recommending any particular hospital. I went to small town GP and Endo but only after I went to large teaching hospital did I learn about the kinds of blood tests that are available. I was told to stop taking Zinc (how did I know that there is a copper-zinc ratio) I also learned that I had Amtotrophy plus Multifocal PN. IMHO if you have your ducks in a row and do what you can now, years later you won't be beating yourself over the head. I was a diabetic that was playing games with my Dr. and payed the price. An ounce of prevention is worth a pound of something or other. Good Luck, Ken in Texas.

I also live in Wisconsin. The Mayo Clinic Health System, where I live, misdiagnosed me as having "Idiopathic Peripheral Neuropathy". After going to a different health-system not connected to Mayo, a skin biopsy was done and I was found to have Small Fiber Neuropathy which is quite different than PN but does cause PN type symptoms. Have you had a skin biopsy done by a neurologist in order to, at the very least, rule out SFN?

[QUOTE=jobby99;1126351]Sounds like possible compression of the brachial plexus, a major neurovascular bundle that runs through a narrow space in the brachial region. If you have weakness in your group, specifically, the 4th and 5th digits of one or both hands, I would seek out a neurosurgeon familiar with Thoracic Outlet Syndrome. They can perform movements of your arm and test your grip strength to indicate possible compression. The only cure is to stop overhead activities and reaching with arms for the time being. If this does not relieve symptoms, physical therapy and/or surgery is most likely needed.

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Can you give more information on how the the brachial plexus could cause neuropathy in his feet? I am doing my own research on what is happening to me and I find this very interesting. I often feel convinced that my neuropathy is caused by injury in my neck and shoulders from years of too many pushups and plank pose. Not one doctor has yet to even think twice about it before they say no. I went to a spine surgeon and he said no way, but my first upper body symptoms were loss of coordination when playing guitar. Weakness in especially the pinky.

Welcome SFNnotPN.

--small fiber neuropathy is merely a description of a type of neuropathy that preferentially affects the small, unmyelinated fibers that subsume the sensations of pain and temperature.

It is also the variety of neuropathy most likely to be diagnosed as idiopathic--autoimmune, toxic, and/or borderline glucose dysregulation are often suggested as causes but are hard to prove.

The problem may be that as far as I know, Mayo still does not do skin biopsies to document density and condition of those small fibers (which may have something to do with the fact that the procedure, norming, and protocols for skin biopsy were developed at Mayo's great rival, Johns Hopkins).

I went to the Mayo Clinic in Rochester Mn. with all of the classic symptoms of SFN.

They ran a 1,001 tests and labs, including a skin biopsy, and said I have nerve pain. They said I can go the their pain clinic if needed.

I had to always push to see a neurologist, that was not an neurologist resident. The resident that I had was not very good at listening, caring or communicating, in fact I actually fired her near the end of my workup and went back to St. Paul. I then saw a great local neurologist that actually cared about me.

I would not go back or recommend them for a SFN evaluation.

Thanks

its hard for us to grasp the childish mentality involved in not doing a test that has become the definitive test for sfn, at the expense of the patients well being, because a rival institution developed it.