Just Diagnosed with Small Fiber Neuropathy

Hi @rwinney you may have noticed I moved your post to this existing discussion about Small Fiber Neuropathy so that you can connect with others who have similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

I wanted to tag fellow Connect members @johnbishop and @lorirenee1 as they both have small fiber neuropathy and may be able to share what they have heard about this treatment option.

Back to you @rwinney, are you currently undergoing this treatment or are you considering it? How are you currently treated?

Hello @rwinney, There is another discussion where @elsa discusses lidocaine infusions for intense nerve pain.

> Groups > Chronic Pain > Infusions for widespread, intense nerve pain, probably due to MS
-- https://connect.mayoclinic.org/discussion/infusions-for-widespread-intense-nerve-pain-probably-due-to-ms-1/

I would also be interested in knowing if you are considering a lidocaine infusion for treatment as @ethanmcconkey mentioned. Have you considered a pain clinic or other alternative treatment?

I am in Egypt now and I went to take a second opinion for my case: Small Fiber polyneuropathy.The neuro surgeon thinks it might be CIDP chronic inflamatory demylinated poly neuropathy.He is recomending the use of IVIG interavenous immunogloblin Which requirs hospital setting for admistration 6 hours daily for 5 days each moth for 2 month then 1 day for 6 month.Has anyone heard about this before?

Hi @azza1 -- there are a few other discussions that you might want to read through and ask your questions on IVIG.

> Groups > Neuropathy > CIDP (chronic inflammatory demylinating polyneuropathy)
-- https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/
> Groups > Neuropathy > IVIG Infusions
-- https://connect.mayoclinic.org/discussion/ivig-infusions/

There is also another article that I ran across that you may be interested in - Long-term efficacy of intravenous immunoglobulin treatment in 49 patients with chronic inflammatory demyelinating polyradiculoneuropathy (P5.2-075)
-- https://n.neurology.org/content/92/15_Supplement/P5.2-075.abstract

I have Small Fiber Polyneuropathy not CIDP
Do you think the IVIG help me ? Thank you

Hi ,
I was diagnosed with idiopathic small Fiber Polyneuropathy 3 years ago after the diagnosed wrong due to the result of my blood work . The EMG is normal too .
The symptoms get worse every year . Neuro after he try a lot of medication with me ex ;
Lyrica , Aventyl . Gabapentin Nabilone ( chemical THC )
Finally sent me to the pain clinic and I am on CBD natural twice a day and THC at night . It mask the pain only . Before I take it , was I have sever pain and burning reach to my both knees and right hand . I feel better with CBD because it mask the burning sensation but there is no cure of this disease or even improvement in my case because There is no reverse to the nerve after it damaged .
I hear about the IVIG infusion , I try to ask is there any one with my situation , get this injection?
Thank you

my docs want to put me on gab or lyrica. how muchof those were you on and was they hard to get off

I think Lyrica will be better than Gabapentin.

I hope Lyrica works better for you than it did me. I filed a complaint with the FDA. I took the maximum dose of Neurontin (Gabapentin) but it didn’t help my Neuropathy. At my doctors office one day everyone in the waiting room was talking about Lyrica and how awful it was, I readily agreed. I have a friend that takes it for fibromyalgia and it really helps her.

I had a normal EMG yesterday so I don’t have large fiber involvement. The Neurologist did the skin biopsy to see if it is small fiber which I think it might be. I hope to get results in a week or so. I had a normal EMG in 2005 when it first started however they didn’t have the skin biopsy then or it wasn’t offered. The pain actually lessened through the years but now it’s back with a vengeance. I also was diagnosed with Erythromelagia but it is relatively mild but the other nerve pain is vicious right now and am unable to do much. The Neurologist does not know what is causing the fasciculations in feet, toes, legs. I’m just wondering if it’s from nerve damage although the fasciculations usually occur in large fiber. It’s all so strange and difficult to figure out. Thank you for any insight you may have. -Laura