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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@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

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Replies to "Hi, I am from London, UK. I was diagnosed with idiopathic small nerve fibre neuropathy two..."

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

Thank you.