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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 | Nov 6, 2018
In reply to @daniellef "Hi, I am from London, UK. I was diagnosed with idiopathic small nerve fibre neuropathy two..." + (show)
@daniellef

Hi, I am from London, UK. I was diagnosed with idiopathic small nerve fibre neuropathy two and a half years ago but have had the symptoms for at least 12 years and these have gradually worsened over time. My symptoms are mainly itching and burning on scalp, face and arms and prickling sensations on my legs, feet and arms. I have tried all the medications recommended for SFN as well as lidocaine infusions, botox injections into the scalp but nothing has worked to date. I am able to work part time and try to enjoy life as much as possible despite my symptoms. I have unsuccessfully been trying to find out if I can have intravenous immunoglobulin but have told that 1. there is a shortage of it in the UK and it is very very expensive and 2. there have been no clinical trials performed in the UK to date to prove that this treatment is effective for SFN. I am still looking into this as I am not giving up just yet! I was wondering if anyone out there has found immunoglobulin to be effective/helpful for idiopathic SFN.. Of course as in any treatments available for SFN they only mask the symptoms and do not cure the disorder. I am also going to investigate whether diet has an impact on neuropathic symptoms and I was wondering if anyone else has managed to find out what kinds of foods to avoid etc. I try and live a healthy lifestyle but there may be foods which I should avoid which may possibly help my symptoms? Any advice would be greatly appreciated! Regards Danielle

Jump to this post

Hello @daniellef, welcome to Connect. I have small fiber PN with only numbness and tingling, no pain. There really is no cure that I'm aware of for neuropathy. There are treatments and life style changes you can make to help cope with and/or reduce the symptoms. It sounds like you are working on that and it's a great start. I started looking at dietary changes after reading The Wahl's Protocol and the story of the author Dr. Terry Wahl's who was able to get rid of her symptoms of MS and go from using a wheel chair to riding a bike. You can read her story here: https://terrywahls.com/about/about-terry-wahls/

I take a group of supplements - vitamins and minerals that I found in a closed Facebook group - The Solutions to Pain and Discomfort of Peripheral Neuropathy. It's all over the counter stuff and I asked my Mayo doctor about it and they passed it by a pharmacist who commented that he thought the Omega - 3's were a little high but didn't give any warnings. I know the group has over 7000 members and some are in the UK. The group is now a 501c3 not for profit organization and has their own website - http://solutions2pnpd.com/. You can read my story and how I found the group in an earlier post here on Connect at:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

John

REPLY
1 reply
Sandy M | @smorton57 | Nov 6, 2018
In reply to @artscaping "Hi, I use a prescription cream from a compounding pharmacy. It has 3 ingredients.: lidocaine, pilocaine,..." + (show)
@artscaping

Hi, I use a prescription cream from a compounding pharmacy. It has 3 ingredients.: lidocaine, pilocaine, keptoprofen. My neurologist just made it stronger to handle more severe "needles" in my hands and wrists. It takes the edge off, especially at night for sleeping.

Jump to this post

What is the name of this prescription cream u use.

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Nov 6, 2018

@smorton57, The compound consists of Lidocaine 10%, Prilocaine 2.5%, Ketoprofen 5%, Ketamine 5%, Amitryptiline 10% added to a base.
It takes the tingles away just long enough for you to go to sleep. You can also use it during the day as needed. Chris

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Nov 6, 2018

@morton57, I neglected to tell you that there are no names for the compounds as they are custom made for you. This time the pharmacist and my neurologist collaborated on the formula. This is my 3rd formula so they are making every effort to stay on top of my needs as they change with time. This one has a bit more oomph than the last one. Be at peace today. Chris

REPLY
spanning | @spanning | Nov 6, 2018

Since I have auto immune problems, too, lost my hair about 10 years ago to Alopecia. The last year or so, my head itches so bad. Was to a dermatologist but so far anti-itch cream isnt working either. Has anyone had this problem?

REPLY
johnmcmillan | @johnmcmillan | Nov 6, 2018
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

Jump to this post

I'm a new member of your group. I've thought a lot about trying to find others with a similar condition as mine so I don't make uninformed decisions. I am 67 now but at 18 years old I came down with Guillan Beret syndrome (sp?) so I believe my nerve system is compromised. I started getting prickly, burning, achy feelings in the feet 4 years ago that are somewhat tolerable during the day but hard to tolerate at night especially on the left foot where I had ankle surgery just prior to the diagnosis of chronic, ideopathic, peripheral neuropathy. The condition got so bad that I wasn't myself, had anxiety, depression which I've never experienced before so was told to start on gabapentin which helped a lot. Smaller doses became larger doses to keep the nerve pain at bay and get sleep. I tried to withdraw last year (by reducing by 300mgs/day per week) and came down to 600mgs/day from 3600 however the pain and loss of sleep had me bringing it back up again. I've been on gabapentin for about 4 years and am now at 2700mg/day.
My goal now is to try to withdraw from taking gabapentin entirely.
Question: Would it be better to withdraw more slowly - like by 100mgs/day and hold that for two weeks and tolerate the nerve pain and loss of sleep to get off the drug, or should I slow it down even more?
I fear the anxiety, depression, pain will be worse than the side affects of the drug, so thence the question.

REPLY
1 reply
spanning | @spanning | Nov 6, 2018
In reply to @daniellef "Hi, I am from London, UK. I was diagnosed with idiopathic small nerve fibre neuropathy two..." + (show)
@daniellef

Hi, I am from London, UK. I was diagnosed with idiopathic small nerve fibre neuropathy two and a half years ago but have had the symptoms for at least 12 years and these have gradually worsened over time. My symptoms are mainly itching and burning on scalp, face and arms and prickling sensations on my legs, feet and arms. I have tried all the medications recommended for SFN as well as lidocaine infusions, botox injections into the scalp but nothing has worked to date. I am able to work part time and try to enjoy life as much as possible despite my symptoms. I have unsuccessfully been trying to find out if I can have intravenous immunoglobulin but have told that 1. there is a shortage of it in the UK and it is very very expensive and 2. there have been no clinical trials performed in the UK to date to prove that this treatment is effective for SFN. I am still looking into this as I am not giving up just yet! I was wondering if anyone out there has found immunoglobulin to be effective/helpful for idiopathic SFN.. Of course as in any treatments available for SFN they only mask the symptoms and do not cure the disorder. I am also going to investigate whether diet has an impact on neuropathic symptoms and I was wondering if anyone else has managed to find out what kinds of foods to avoid etc. I try and live a healthy lifestyle but there may be foods which I should avoid which may possibly help my symptoms? Any advice would be greatly appreciated! Regards Danielle

Jump to this post

Thank you.

REPLY
spanning | @spanning | Nov 6, 2018
In reply to @barbarn "@spanning - after reading your post, I would definitely at least find another neurologist, SF SD..." + (show)
@barbarn

@spanning - after reading your post, I would definitely at least find another neurologist, SF SD is not that far (compared to anyplace else in the US) from Mayos in Rochester. John Bishop gave you a link to Mayos for appointments, I would certainly consider that!

Jump to this post

I am approved to go to Mayo just have to see when they can get me in.

REPLY
1 reply
spanning | @spanning | Nov 6, 2018
In reply to @spanning "I am approved to go to Mayo just have to see when they can get me..." + (show)
@spanning

I am approved to go to Mayo just have to see when they can get me in.

Jump to this post

I question the local neurologist that says my sensory poly neuropathy is caused by chemo. It has been almost 4years since my last chemo treatments. In my heart I think I have auto immune problems and chemo did not help but I don’t agree with it being primary cause. Curious to your chemo experiences?

REPLY
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