1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

Mentor
John, Volunteer Mentor | @johnbishop | Oct 28, 2019
In reply to @rosy33 "I would like to introduce myself as someone who has been living with Idiopathic Neuropathy for..." + (show)
@rosy33

I would like to introduce myself as someone who has been living with Idiopathic Neuropathy for about 20 years. I have run the gamut with testing and several different neurologists. I've had EMG testing 2 different times with 2 different results, first no neuropathy or maybe small fiber, and just recently polyneuropathy. I really believe that vitamins, supplementation and nutrition would help. I've tried different meds but so far I'm dealing with the pain because I can't tolerate the side effects. I'll be 81 in January, and other than PIN, I'm in pretty good health. I'm wondering if anyone has had any experience as far as seeking out a professional who can help with nutritional and supplement guidance when it comes to neuropathy. The many different doctors I have seen over the years know absolutely nothing about neuropathy, that includes my Primary Care doctor, 2 podiatrists, 3 different Neurologists, and even physical therapy. One doctor told me it was called Idiopathic because the idiot doctors don't know anything about it, that made me smile. Thank you for listening. 🙂

Jump to this post

Hi @rosy33, I would like to add my welcome to Connect along with the other members. I also have idiopathic small fiber PN which I've had for well over 20 years (in my mid 70s now) but I only have the numbness. I didn't bother to get a diagnosis because when is started in my toes and I asked my primary care doc about it he said it was probably nerve damage and they could test for it. I said if they find it's nerve damage what can you do to fix it. When he told me nothing I said then why test for it if you can't fix it. That seems like eons ago now. When it progressed to just below the knees I started worrying and went to a neurologist who diagnosed me. Sad was I when he told me the same answer as the first doc when I asked what can you do for the numbness. He said there were no topical treatments or medications that would help with the numbness. That's when I made up my mind to learn everything I could about my condition and try to see if there was something that could help.

I have tried most every over the counter topical with zero success. Have also tried several types of TENS units with little to no success. That's about the time I found Connect which helped me immensely to know that I was not alone and learn what others have tried and what has helped them. I found a closed group on Facebook (http://www.facebook.com/groups/spnpd) and did a lot of reading about the supplements they use. I've been on them since Sept 2016 and feel that the supplements have slowed or possibly stopped the progression of the PN in my legs. When I started the numbness was just below the knees on both legs. Now it feels to be just above the ankles on both legs. They also have a website - http://solutions2pnpd.com/.

REPLY
1 reply
iceblue | @iceblue | Oct 28, 2019
In reply to @rosy33 "Good Morning @ew100, The letters PIN are short for Peripheral Idiopathic Neuropathy, something I learned on..." + (show)
@rosy33

Good Morning @ew100, The letters PIN are short for Peripheral Idiopathic Neuropathy, something I learned on another support site (NeuroTalk.com). I believe depletion of the B vitamins, mainly B1,12 and 6 have a definite effect on neuropathy. My urologist has taken a course in health and wellness and is helping me with vitamins and supplements. I just joined her group this week and started taking a special packet of daily vitamins. I will meet with her 5 weeks from now to see if it makes a difference in the symptoms of my PIN. I decided to do this because I believe nutrition and vitamins are essential to our health, especially at our age. There are so many different brands and kinds of vitamins that can be very confusing. My daughter is a certified health and wellness coach, and has finally convinced me that "We are what we eat". I have given up sugar and drinking smoothies and herbal teas which have helped me to lose 30 pounds over a period of 2 years (mostly belly fat). My daughter can't prescribe any tests so that's where my urologist comes in. Every other doctor I have ever talked to about vitamins, nutrition or neuropathy doesn't know anything about any part of it, even the so-called Neurologists. I asked my PC why my ankle turns white when I flex it and why it's red and hot, her answer was, "I don't know". We can learn more here in these groups with others that are in the same predicament as we are. I am into the nutrition side of therapy rather than meds. I am trying to stay away from any prescriptions for as long as I can. I am more than willing to help if I can.....😍

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The whole question of how Vitamin B fits into this is really interesting to me. The last time my B12 was tested it was twice as high as the normal range. Both my doctor and Neurologist said that a good thing and had nothing to do with the burning of my feet. My Neurologist said that in his career (15 years?) he has only seen one case of neuropathy that was due to B12 deficiency...

REPLY
1 reply
maddholly | @maddholly | Oct 28, 2019

Hello, just signed up at Mayo Clinic so I could post in this thread.

I'm a 34 year old male with Small Fiber Neuropathy. I had all the neurological and blood tests to rule out any of the major concerns like diabetes, etc. So, therefore, we landed on alcohol as the cause since I had been an abuser (6+ drinks everyday for 10+ years). I have since stopped drinking any alcohol and it's been about 6 months. I have noticed a slight improvement, in that the "worst" of my symptoms isn't as bad as it was, but there's still definitely a very noticeable tingling and numbness in the bottom half of legs, top of head, tips of nose, fingers etc.

So I have a couple of questions for anyone else who may have experience living with alcohol caused SFN. 1) Did you ever fully heal or become symptom-less after quitting alcohol and if so how long did it take? 2) If I go as long as up to a couple of years without alcohol to try and heal, and it just simply appears that the damage I caused is permanent, would it be at all possible to become a VERY moderate drinker of alcohol without making the current SFN any worse? I'm talking like 2 drinks a week MAX and going months at a time without any drinks at all. Or is it that, once a person has SFN, any amount of alcohol at all will keep damaging the nerves? I haven't been able to find any info on this at all and doctors seem to think it's a crap shoot at this point whether I heal or not, so I'm looking for personal experiences.

Any information is greatly appreciated.

Thank you

REPLY
2 replies
rosy33 | @rosy33 | Oct 28, 2019
In reply to @iceblue "The whole question of how Vitamin B fits into this is really interesting to me. The..." + (show)
@iceblue

The whole question of how Vitamin B fits into this is really interesting to me. The last time my B12 was tested it was twice as high as the normal range. Both my doctor and Neurologist said that a good thing and had nothing to do with the burning of my feet. My Neurologist said that in his career (15 years?) he has only seen one case of neuropathy that was due to B12 deficiency...

Jump to this post

I believe it is more about B6 rather than B12 which can exacerbate neuropathy if you have too much of it. My blood levels on B6 are normal so I decided to take a multi with 12.5 of B6 in it. After a week my feet and legs are bright red and hot to the touch. I developed a red rash around my right ankle and I have pain all day. I usually have most of the burning pain at night and am able to function during the day, but not since I've been on the B6. I stopped taking it today so I will post here in about a week to see if it helps. The doctors tell you that the B vitamins in combination will work, but I wonder how many of them take the time to research the adverse reactions of B6 and neuropathy.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Oct 28, 2019
In reply to @maddholly "Hello, just signed up at Mayo Clinic so I could post in this thread. I'm a..." + (show)
@maddholly

Hello, just signed up at Mayo Clinic so I could post in this thread.

I'm a 34 year old male with Small Fiber Neuropathy. I had all the neurological and blood tests to rule out any of the major concerns like diabetes, etc. So, therefore, we landed on alcohol as the cause since I had been an abuser (6+ drinks everyday for 10+ years). I have since stopped drinking any alcohol and it's been about 6 months. I have noticed a slight improvement, in that the "worst" of my symptoms isn't as bad as it was, but there's still definitely a very noticeable tingling and numbness in the bottom half of legs, top of head, tips of nose, fingers etc.

So I have a couple of questions for anyone else who may have experience living with alcohol caused SFN. 1) Did you ever fully heal or become symptom-less after quitting alcohol and if so how long did it take? 2) If I go as long as up to a couple of years without alcohol to try and heal, and it just simply appears that the damage I caused is permanent, would it be at all possible to become a VERY moderate drinker of alcohol without making the current SFN any worse? I'm talking like 2 drinks a week MAX and going months at a time without any drinks at all. Or is it that, once a person has SFN, any amount of alcohol at all will keep damaging the nerves? I haven't been able to find any info on this at all and doctors seem to think it's a crap shoot at this point whether I heal or not, so I'm looking for personal experiences.

Any information is greatly appreciated.

Thank you

Jump to this post

Hi @maddholly, Welcome to Connect. I have idiopathic small fiber PN. Once I found out alcohol damages nerves I stopped drinking. I have no medical training or background but from the reading I've done if you have neuropathy any alcohol is not going to help your body if it is trying to recover. Here are a couple of articles that may be helpful.

Alcoholic Polyneuropathy Issues & Treatment
-- https://www.alcohol.org/comorbid/polyneuropathy/

Alcoholic neuropathy
-- https://medlineplus.gov/ency/article/000714.htm

Alcoholic neuropathy: possible mechanisms and future treatment possibilities
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3370340/

I know the initial diagnosis of neuropathy can be pretty discouraging but if you learn as much as you can about the condition and find out what helps others, you might find something that helps you. Have you looked into taking any supplements or vitamins to help with the symptoms?

REPLY
1 reply
helennicola | @helennicola | Oct 28, 2019
In reply to @rosy33 "I believe it is more about B6 rather than B12 which can exacerbate neuropathy if you..." + (show)
@rosy33

I believe it is more about B6 rather than B12 which can exacerbate neuropathy if you have too much of it. My blood levels on B6 are normal so I decided to take a multi with 12.5 of B6 in it. After a week my feet and legs are bright red and hot to the touch. I developed a red rash around my right ankle and I have pain all day. I usually have most of the burning pain at night and am able to function during the day, but not since I've been on the B6. I stopped taking it today so I will post here in about a week to see if it helps. The doctors tell you that the B vitamins in combination will work, but I wonder how many of them take the time to research the adverse reactions of B6 and neuropathy.

Jump to this post

I stopped taking B12 which seemed to make my SFN worse and then stopped the low dose B Complex, my neuro said if my levels were within range , no need. I do think the RAla, magnesium, biotin and omega 3’s have helped.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Oct 28, 2019
In reply to @rosy33 "I believe it is more about B6 rather than B12 which can exacerbate neuropathy if you..." + (show)
@rosy33

I believe it is more about B6 rather than B12 which can exacerbate neuropathy if you have too much of it. My blood levels on B6 are normal so I decided to take a multi with 12.5 of B6 in it. After a week my feet and legs are bright red and hot to the touch. I developed a red rash around my right ankle and I have pain all day. I usually have most of the burning pain at night and am able to function during the day, but not since I've been on the B6. I stopped taking it today so I will post here in about a week to see if it helps. The doctors tell you that the B vitamins in combination will work, but I wonder how many of them take the time to research the adverse reactions of B6 and neuropathy.

Jump to this post

@rosy33 you are so right about B6. Here are some of the sites I've used in the past when researching B vitamins.

VITAMIN B6 TOXICITY
http://www.easy-immune-health.com/vitamin-b6-toxicity.html

B Vitamins for Neuropathy and Neuropathic Pain
https://www.omicsonline.org/open-access/b-vitamins-for-neuropathy-and-neuropathic-pain-2376-1318-1000161.php?aid=90896

B6 section it explains -- too much or too little gives neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

FDA Safety Alert: Biotin Can Affect Medical Test Results
http://cle.clinic/2G6Mp4y

NIH - Nutritional Neuropathies
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

Vitamin B6 Toxicity Revisited: A Case of Reversible Pyridoxine-associated Neuropathy and Disequilibrium. (P4.021)
-- http://n.neurology.org/content/90/15_Supplement/P4.021

REPLY
rosy33 | @rosy33 | Oct 28, 2019
In reply to @johnbishop "Hi @rosy33, I would like to add my welcome to Connect along with the other members...." + (show)
@johnbishop

Hi @rosy33, I would like to add my welcome to Connect along with the other members. I also have idiopathic small fiber PN which I've had for well over 20 years (in my mid 70s now) but I only have the numbness. I didn't bother to get a diagnosis because when is started in my toes and I asked my primary care doc about it he said it was probably nerve damage and they could test for it. I said if they find it's nerve damage what can you do to fix it. When he told me nothing I said then why test for it if you can't fix it. That seems like eons ago now. When it progressed to just below the knees I started worrying and went to a neurologist who diagnosed me. Sad was I when he told me the same answer as the first doc when I asked what can you do for the numbness. He said there were no topical treatments or medications that would help with the numbness. That's when I made up my mind to learn everything I could about my condition and try to see if there was something that could help.

I have tried most every over the counter topical with zero success. Have also tried several types of TENS units with little to no success. That's about the time I found Connect which helped me immensely to know that I was not alone and learn what others have tried and what has helped them. I found a closed group on Facebook (http://www.facebook.com/groups/spnpd) and did a lot of reading about the supplements they use. I've been on them since Sept 2016 and feel that the supplements have slowed or possibly stopped the progression of the PN in my legs. When I started the numbness was just below the knees on both legs. Now it feels to be just above the ankles on both legs. They also have a website - http://solutions2pnpd.com/.

Jump to this post

I had to create a new account on FB. I deleted my original one because there was too much drama. I hope they will accept my new name. Thank you for the link. I am obsessed with the belief that vitamins and clean eating will help to relieve some of the misery we all share. I know we can all learn from each other because other people have no idea what we are going through.

REPLY
cim37343 | @cim37343 | Oct 28, 2019
In reply to @maddholly "Hello, just signed up at Mayo Clinic so I could post in this thread. I'm a..." + (show)
@maddholly

Hello, just signed up at Mayo Clinic so I could post in this thread.

I'm a 34 year old male with Small Fiber Neuropathy. I had all the neurological and blood tests to rule out any of the major concerns like diabetes, etc. So, therefore, we landed on alcohol as the cause since I had been an abuser (6+ drinks everyday for 10+ years). I have since stopped drinking any alcohol and it's been about 6 months. I have noticed a slight improvement, in that the "worst" of my symptoms isn't as bad as it was, but there's still definitely a very noticeable tingling and numbness in the bottom half of legs, top of head, tips of nose, fingers etc.

So I have a couple of questions for anyone else who may have experience living with alcohol caused SFN. 1) Did you ever fully heal or become symptom-less after quitting alcohol and if so how long did it take? 2) If I go as long as up to a couple of years without alcohol to try and heal, and it just simply appears that the damage I caused is permanent, would it be at all possible to become a VERY moderate drinker of alcohol without making the current SFN any worse? I'm talking like 2 drinks a week MAX and going months at a time without any drinks at all. Or is it that, once a person has SFN, any amount of alcohol at all will keep damaging the nerves? I haven't been able to find any info on this at all and doctors seem to think it's a crap shoot at this point whether I heal or not, so I'm looking for personal experiences.

Any information is greatly appreciated.

Thank you

Jump to this post

My husband was recently diagnosed with neuropathy probably caused by alcohol. His doc told him to stop all alcohol and it’s possible for the damaged nerves to heal over time. She said it could take years for full recovery and it’s not guaranteed. He has stopped alcohol altogether but it’s only been a few months. Hopefully this “cure” will work for both of you.

REPLY
1 reply
maddholly | @maddholly | Oct 28, 2019
In reply to @cim37343 "My husband was recently diagnosed with neuropathy probably caused by alcohol. His doc told him to..." + (show)
@cim37343

My husband was recently diagnosed with neuropathy probably caused by alcohol. His doc told him to stop all alcohol and it’s possible for the damaged nerves to heal over time. She said it could take years for full recovery and it’s not guaranteed. He has stopped alcohol altogether but it’s only been a few months. Hopefully this “cure” will work for both of you.

Jump to this post

Thanks for the response and insight. Yeah, I'm definitely willing to give it a few years. Even though I abused alcohol, I have no issue not drinking. I would however be disappointed if I ruined any chances of me being able to have a "special occasion" drink later in life, being how young I am...

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