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My experience with Small Fiber Neuropathy

Neuropathy | Last Active: May 24, 2022 | Replies (85)

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@issacmrobinson77

Here is the issue with your test. They are testing your large fiber nerves. The large fiber nerve test in most cases will come up negative for any issues. The large fiber test can't detect small fiber nerve issues. To get the correct test for the small fiber nerves you must get a biopsy of the skin from a specialist who is knowledgeable about small fiber neuropathy. I have a very serious case of SFN and it took 20 years for a diagnosis through a skin biopsy. They all thought I was crazy. With the pain I was getting I knew I wasn't crazy. With mine I get a devastating itch, burn, stabbing, electric needle stabs all over my body. The itching part is one of the worst parts. My symptoms come about emotionally, physically, mentally, by the heat, by the sun, during the winter times, after hot showers eating spicey foods, eating sweets, exercising, sleeping and dreaming, working, and alcohol consumption. I too felt as if life was hopeless but I still fight on. I take many meds and am still trying to find the cause of my issues. I know more about SFN than most of the Dr's I see which is very frustrating. Just don't give up, question every weird blood result and don't allow anyone to make you feel as if you are crazy and finally demand a skin biopsy for the test. See a heamotologist a rheumatologist an endocrinologist, dermatologist and of course your neurologist and hopefully you will figure things out.

Best of wishes

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Replies to "Here is the issue with your test. They are testing your large fiber nerves. The large..."

Hello @issacmrobinson77, Welcome to Connect. I have small fiber peripheral neuropathy but my neurologist diagnosed me without using the skin punch biopsy which is OK by me. I had the condition for over 20 years before bothering to get a diagnosis. I had several nerve conduction tests along with a physical exam by the neurologist. The end result was the same as before, no treatment available to help with the numbness.

That's really why I started reading more about neuropathy and learning as much as I could. The two sites I've found most helpful for learning more:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

It sounds like you also have done a lot of your own research to learn more. I shared my neuropathy journey in another discussion here -
https://connect.mayoclinic.org/comment/310341/

What have you found most helpful?

I have a condition called brachiordial pruritus which is a condition that comes and goes and causing terrible itching on my arms. I don’t know if you are familiar with it, but the only thing that helps it is using ice packs. In fact, that is one of the ways they diagnosis it. Prescription creams don’t help at all. Many nights I go to sleep and lean on ice packs. I wanted to recommend you try ice, if you haven’t. It’s the only thing that has brought me relief.