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Idiopathic Small Fiber Neuropathy Research

Neuropathy | Last Active: Jun 19 12:24pm | Replies (135)

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@dunkinmacdougall

Is there such a thing as a definitive diagnosis of the type of neuropathy that a person may have? I am told I have idiopathic neuropathy. That tells me they don't know.
I have been to a seminar for a clinic in Utica Michigan which claims they can help discover the cause of a person's neuropathy.

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@dunkinmacdougall
neuropathy, is it peripheral neuropathy? I have PN because my nerves were, and continue to be damaged by an autoimmune disease that reduces the blood flow in my arteries.
This autoimmune disease is rare so many doctors have not seen it. Check out Vasculitis. There are about 15 diseases that fall under the “umbrella” of Vasculitis. Many of them inflame the arteries so blood flow is restricted.

The Vasculitis I have is cutaneous polyarteritis nodosa. It’s one of the most rare diseases. It gave me PN. My feet, and legs are very painful at times.

I hope you find an answer. There is no cure, only treatments that can help you with some of the symptoms.

There are so many kinds of neuropathy that I'm not sure there is a one size fits all test to determine the cause. If they start to talk you into a bunch of tests/treatments not covered by insurance, be wary. Places like Mayo Clinic or the closest teaching hospital (university hospital) would be your best bet. They see more odds cases and they will be willing to pursue it. Common meds for neuropathy may also help you even if you don't know the specific type. Best of luck to you.

My neuropathy was initially listed as peripheral neuropathy, cause unknown. They had no idea what was causing my issues and the abnormal EMG NCS results. They wanted to do a nerve biopsy and my mother said no. I honestly didn't pursue the cause after my initial frustrations. It was finally identified 24 years later when my son had some serious issues and received genetic testing. I was so happy to have a name and explanation. They guessed CMT, but it was HNPP (Hereditary Neuropathy and Pressure Palsies) -- in the same family. One disorder has an extra chromosome and one is missing a chromosome. HNPP is rare. Most doctors including neurologists haven't heard of it. With HNPP, the protective myelin sheath starts disappearing leaving the nerves very prone to damage. My neurologist who used to work at a teaching hospital was not only familiar with HNPP, but had seen four patients with it in the past.

Hi @dunkinmacdougall, I too have idiopathic small fiber peripheral neuropathy and my neurologists best guess was that it is probably genetic. You will notice that we moved your post to an existing discussion on the same topic here:
--- Idiopathic Small Fiber Neuropathy Research: https://connect.mayoclinic.org/discussion/mayo-clinic-and-idiopathic-small-fiber-neuropathy-research/.

I had the opportunity 4 years ago to listen to a group of neurologists at a meeting for the Minnesota Neuropathy Association and an "idiopathic" diagnosis was the subject of a few audience questions. An 80 year old neurologist from the University of Minnesota brought the house down when he told us the idiopathic neuropathy diagnosis came from the idiot neurologist who did the diagnosing. While we all laughed he also said that if a person lives long enough they will eventually get neuropathy because nerve cells die just like other cells.

Idiopathic does seem like a bummer when there are some types of neuropathy where you have better treatments than for other types. I've always felt that not knowing is not the end of the world since there is no real cure for neuropathy so you just need to find a treatment that provides some relief for your symptoms.

Do you have any references for the neuropathy clinic in Utica?