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Small Fiber Neuropathy: What helps?

Neuropathy | Last Active: May 17 2:03pm | Replies (284)

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@aliceccentric

My fiance and I are looking for experts in treating Small Fiber Neuropathy. Who are the best doctors/teams to treat this condition and where are they located?

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Replies to "My fiance and I are looking for experts in treating Small Fiber Neuropathy. Who are the..."

Hello @aliceccentric, Welcome to Connect. You are asking a good question and I'm hoping you will get some responses. For me, the better question is what types of treatments work best for small fiber neuropathy. I've had neuropathy for over 20 years but was only recently diagnosed a couple of years ago because I was always told if it's nerve damage there's nothing they can do about it anyway. I finally wanted to know and had an EMG and other tests and met with a Mayo neurologist and told I have idiopathic small fiber peripheral neuropathy. I only have numbness with my neuropathy so asked the neurologist what can be done to help with the numbness. I was pretty depressed when I was told nothing helps with the numbness. There are no topicals, oils or treatments that can address the numbness. All of the medications and treatments address and mask the pain. That started my search and is how I found Mayo Connect. I've posted what has helped me a little in my story here:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

There is a lot of research being done but I don't know how it relates to new treatments yet that have been successful and have had FDA clinical trials. Here are a few of the links I've found from the past few years.

ScienceDaily - Stem Cell Supplement - Proven To Increase Stem Cells (Sept 2016)
-- https://www.sciencedaily.com/releases/2016/09/160916132053.htm

NeuroScience News - Blocking Neuron Signaling Pathway May Lead to New Treatments For Peripheral Neuropathy (Jan 2017)
-- https://neurosciencenews.com/peripheral-neuropathy-signaling-pathway-5958/

ScienceDaily - Nerve wrapping nanofiber mesh promoting regeneration (Feb 2017)
-- https://www.sciencedaily.com/releases/2017/02/170228223753.htm

@aliceccentric have tried any treatments that have or haven't helped? Are you able to share a little more about your small fiber neuropathy symptoms?

Hoping some of our other members will be able to provide some suggestions for you.

John

@aliceccentric, welcome to our very involved and committed group of folks dedicated to finding treatments that help and then sharing them with others who suffer from a similar condition. I received my diagnosis of idiopathic small fiber neuropathy 2 years ago. Unlike @johnbishop, my slice of the pie also arrived with pain. So the steps for me in rank order are numbness, tingling, and then needle-like pain. With the growing intensity of my symptoms over time, the numbness became a more urgent issue as my stability declined and I was on the verge of giving up driving because I couldn't feel my feet. The solution arrived in an unexpected way....myofascial release therapy conducted by an expert level MFR therapist. I now see her one a week and some of our time together is spent bringing feeling back to my hands and feet. It is great to walk across a carpeted floor and actually feel the loops of the fiber. It is rewarding to know that my foot is actually on the brake in the car. My feet are not as tight and the feeling of restriction is considerably alleviated. The benefit of the treatments can last up to 2 weeks. Might be worth a try.