1. < Neuropathy

Idiopathic Small Fiber Neuropathy Research

Posted by magnum52 @magnum52, Mar 29, 2021

This coming June, I will make a journey to the Mayo Clinic in Rochester, Minnesota seeking answers to my diagnosis of idiopathic small fiber neuropathy. This will be my last major effort in getting some kind of relief. I was diagnosed about 5 years ago (skin biopsy) and have tried gaba, Lyrica and Cymbalta. I am currently taking 300 mg of gaba ( got as high as 2,400 but it’s useless) and 60mg of Cymbalta. I retired from the pharmaceutical industry after 40 years, and was 62 when diagnosed. My major complaint is burning feet, especially the bottom of my feet. I exercise routinely.

From my research it appears that there is not a lot of research on the etiology of neuropathy, but more on palliative treatment, and not much of that. Mayo is considered the #1 neurology hospital in the country. Does anyone have any first hand information as to what research is taking place there, if any?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Apr 9, 2023
In reply to @dunkinmacdougall "Is there such a thing as a definitive diagnosis of the type of neuropathy that a..." + (show)
@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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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?

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 4, 2024

@magnum52, I just saw this clinical trial yesterday and sent an email to see if I might qualify for the study since I was diagnosed at Rochester Mayo with idiopathic small fiber PN mostly likely hereditary causes. You might want to check it out.

--- Stem Cells from Skin Fibroblasts in Patients with Hereditary Peripheral Neuropathy: https://www.mayo.edu/research/clinical-trials/cls-20319883?

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lkhender | @lkhender | Jun 19, 2024
In reply to @joannemm30809 "God help us all. I feel like I'm living in a 3rd world country regarding my..." + (show)
@joannemm30809

God help us all. I feel like I'm living in a 3rd world country regarding my entire dealings with the medical field etc.

I'm so fed and very mad that SO MANY doctors brush off so many patients complaints and their symptoms or have to be pushed into doing tests that can rule in or rule out a disease etc.

I'm just furious at this point. I will be traveling to a city about two hours North of my home in SW Fl to a Long Haulers clinic. I've about given up on Mayo in Jacksonville due to Mayo only have ONE neurologist that deals with Autonomic Nervous System issues and the many negative patient reviews mostly all saying the same thing about this one neurologist AND to top of off the seven hour drive. Gas and hotel costs etc I'm about to wash my hands with all this. Sucks. Tired of complacent or passive doctors and those who will NOT listen etc

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Wow! You nailed my thoughts. As a retired RN, I’m totally disgusted with healthcare today. Most providers are so concerned with following “protocol” that they ignore the patient. It’s exhausting to find someone who cares enough to listen. In my 38 year career I saw many changes and now that my husband and I are in our 70s we need a good provider but don’t know where to turn. The “system” has corrupted our healthcare with their “protocols.”

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 19, 2024
In reply to @lkhender "Wow! You nailed my thoughts. As a retired RN, I’m totally disgusted with healthcare today. Most..." + (show)
@lkhender

Wow! You nailed my thoughts. As a retired RN, I’m totally disgusted with healthcare today. Most providers are so concerned with following “protocol” that they ignore the patient. It’s exhausting to find someone who cares enough to listen. In my 38 year career I saw many changes and now that my husband and I are in our 70s we need a good provider but don’t know where to turn. The “system” has corrupted our healthcare with their “protocols.”

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@lkhender It sounds like you might be ready to join the patient revolution - great place to learn how each of us concerned with the current healthcare today can hopefully turn it around - https://www.patientrevolution.org/.

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1 reply
lkhender | @lkhender | Jun 19, 2024
In reply to @johnbishop "@lkhender It sounds like you might be ready to join the patient revolution - great place..." + (show)
@johnbishop

@lkhender It sounds like you might be ready to join the patient revolution - great place to learn how each of us concerned with the current healthcare today can hopefully turn it around - https://www.patientrevolution.org/.

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Thanks @johnbishop. I'll certainly look at the website.

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drdianeschneider | @drdianeschneider | 6 days ago
In reply to @johnbishop "Hello @solobeee, Welcome to Mayo Clinic Connect. Unfortunately, small fiber PN is not a condition I..." + (show)
@johnbishop

Hello @solobeee, Welcome to Mayo Clinic Connect. Unfortunately, small fiber PN is not a condition I would wish on my worst enemy so to speak. I'm glad you found Connect where you can learn what other members have shared helps them and hopefully find some relief for the pain. There are a couple of discussions you may wish to join to read the experience of other members including myself. I have small fiber PN among other conditions but I only have numbness without the pain. My neurologist said I'm in the 20% group of folks with PN who don't have the pain.

- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/405325/
- Living with Neuropathy – Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
- Illusive Diagnosis, Pain Increasing: https://connect.mayoclinic.org/discussion/illusive-diagnosis-pain-increasing/

What helps me is taking each day one step at a time and learning as much as I can by researching my condition and reading everything I can find on new research and treatments. Are you able to share a little about any treatments you've tried or thought about trying?

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Dear John, I saw this old post of yours and, as I also have SFPN with numbness ONLY, I wondered if you have found anything that improves your condition since you posted last. One neurologist opined that "it's the flecainide" (which I only take as needed for an atrial fib episode, not daily). I also have a long history of ulcerative colitis, and certain research indicates maybe 30% of people with inflammatory bowel diseases get PN. I guess we have to say we are the "lucky ones" who don't have pain, but... it is still an uncomfortable and unpleasant condition. A podiatrist put me on Metanx (an algal oil) which I'm trying. Since no one talks about the "numbness only" type of PN, I am hoping you may have some news from the last 4 yrs since you wrote. Many thanks, John! Blesssings, Diane

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | 6 days ago
In reply to @drdianeschneider "Dear John, I saw this old post of yours and, as I also have SFPN with..." + (show)
@drdianeschneider

Dear John, I saw this old post of yours and, as I also have SFPN with numbness ONLY, I wondered if you have found anything that improves your condition since you posted last. One neurologist opined that "it's the flecainide" (which I only take as needed for an atrial fib episode, not daily). I also have a long history of ulcerative colitis, and certain research indicates maybe 30% of people with inflammatory bowel diseases get PN. I guess we have to say we are the "lucky ones" who don't have pain, but... it is still an uncomfortable and unpleasant condition. A podiatrist put me on Metanx (an algal oil) which I'm trying. Since no one talks about the "numbness only" type of PN, I am hoping you may have some news from the last 4 yrs since you wrote. Many thanks, John! Blesssings, Diane

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Hi Diane, Not much change in my numbness in the past 4 years but I do consider that a win since it's also not any worse. I do think the supplements I take help some but don't really make it go away which we all would like. I also think it's important to keep the skin hydrated with a good moisturizer. I like the LifeFlo magnesium lotion which seems to have a calming affect. The reason it's harder for me to tell if the numbness is any better is that I also have to wear 20-30 mmhg compression socks up over the calves and I always have that squeezing feeling on the feet and legs.

I've found it helps me walk a little better if I don't have the really cushy shoes that I used to love so much. I have some zero drop (flat) shoes that help me feel the ground a little better but if I have to walk any distance like to a Mayo appointment in downtown Rochester, I like a little cushion to make the walk easier.

I asked about Metanx at one point in time but was worried about the B6 content as a lot of research points to causing neuropathy (B6 toxicity) if the levels are too high. @ray666 started a discussion awhile back on EB-N5 which may be another option - https://connect.mayoclinic.org/discussion/eb-n5-and-idiopathic-pn-long-term-usage/.

I would keep asking questions and learning about any new treatments that may be available. It pays to advocate for ourselves. Hoping you find some answers! John

REPLY
2 replies
Ray Kemble | @ray666 | 6 days ago
In reply to @johnbishop "Hi Diane, Not much change in my numbness in the past 4 years but I do..." + (show)
@johnbishop

Hi Diane, Not much change in my numbness in the past 4 years but I do consider that a win since it's also not any worse. I do think the supplements I take help some but don't really make it go away which we all would like. I also think it's important to keep the skin hydrated with a good moisturizer. I like the LifeFlo magnesium lotion which seems to have a calming affect. The reason it's harder for me to tell if the numbness is any better is that I also have to wear 20-30 mmhg compression socks up over the calves and I always have that squeezing feeling on the feet and legs.

I've found it helps me walk a little better if I don't have the really cushy shoes that I used to love so much. I have some zero drop (flat) shoes that help me feel the ground a little better but if I have to walk any distance like to a Mayo appointment in downtown Rochester, I like a little cushion to make the walk easier.

I asked about Metanx at one point in time but was worried about the B6 content as a lot of research points to causing neuropathy (B6 toxicity) if the levels are too high. @ray666 started a discussion awhile back on EB-N5 which may be another option - https://connect.mayoclinic.org/discussion/eb-n5-and-idiopathic-pn-long-term-usage/.

I would keep asking questions and learning about any new treatments that may be available. It pays to advocate for ourselves. Hoping you find some answers! John

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Hi, Diane

John cited a post I'd left a long time back about EB-N5. I might add asa brief footnote that as of today I have been using EB-N5 for nearly two years (wth my neurologist's blessing). My large-fiber PN (poor balance, but no pain) hasn't worsened in all that time (confirmed a short while ago by a second EMG). Is that thanks solely to EB-N5? I can't say. Something I'm doing seems to be serving me well and that pleases me.

I wish you success in your pursuit of good, lasting health!

Cheers!
Ray (@ray666)

REPLY
1 reply
drdianeschneider | @drdianeschneider | 2 days ago
In reply to @johnbishop "Hi Diane, Not much change in my numbness in the past 4 years but I do..." + (show)
@johnbishop

Hi Diane, Not much change in my numbness in the past 4 years but I do consider that a win since it's also not any worse. I do think the supplements I take help some but don't really make it go away which we all would like. I also think it's important to keep the skin hydrated with a good moisturizer. I like the LifeFlo magnesium lotion which seems to have a calming affect. The reason it's harder for me to tell if the numbness is any better is that I also have to wear 20-30 mmhg compression socks up over the calves and I always have that squeezing feeling on the feet and legs.

I've found it helps me walk a little better if I don't have the really cushy shoes that I used to love so much. I have some zero drop (flat) shoes that help me feel the ground a little better but if I have to walk any distance like to a Mayo appointment in downtown Rochester, I like a little cushion to make the walk easier.

I asked about Metanx at one point in time but was worried about the B6 content as a lot of research points to causing neuropathy (B6 toxicity) if the levels are too high. @ray666 started a discussion awhile back on EB-N5 which may be another option - https://connect.mayoclinic.org/discussion/eb-n5-and-idiopathic-pn-long-term-usage/.

I would keep asking questions and learning about any new treatments that may be available. It pays to advocate for ourselves. Hoping you find some answers! John

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John, thank you so much for the detailed answer! First, I'm looking into getting some of the lotion/moisturizer you use. Second, YES, I also am concerned about the B6 in Metanx and am going to question them about it and do some more research. I will keep you informed if anything new comes to light. All my best wishes,too, for more improvement for you--Cheers, Diane

REPLY
drdianeschneider | @drdianeschneider | 2 days ago
In reply to @ray666 "Hi, Diane John cited a post I'd left a long time back about EB-N5. I might..." + (show)
@ray666

Hi, Diane

John cited a post I'd left a long time back about EB-N5. I might add asa brief footnote that as of today I have been using EB-N5 for nearly two years (wth my neurologist's blessing). My large-fiber PN (poor balance, but no pain) hasn't worsened in all that time (confirmed a short while ago by a second EMG). Is that thanks solely to EB-N5? I can't say. Something I'm doing seems to be serving me well and that pleases me.

I wish you success in your pursuit of good, lasting health!

Cheers!
Ray (@ray666)

Jump to this post

Ray, thank you so much for your posting. I have not heard of EB-N5, so I need to discuss that w/ my neuro. Not eager for a 2nd EMG, though 🙂 . I have Small Fibre PN. You are blessed that it seems to have been stopped in its tracks... but of course we all hope for a return to normal feeling. My balance isn't too bad, but I hate the feeling of walking on bubble wrap!! Blessings and all good wishes for full healing... Diane

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