Just Diagnosed with Small Fiber Neuropathy

Posted by boo55 @boo55, Fri, Feb 1 5:46pm

Hi . I am a bit scared here. Had positive skin biopsy for small fiber. What tests will the Neuro ask for to find causation? Was diagnosed prediabetic in Fall. My Dad had similar issues and eventually lost a toe. Always felt he was walking ” on fire “. My feet have similar issues. This is just one big Ick. Boo

Liked by teetee7, jasont, Mrs. H

@albiet

john, thank you. the dr first diagnosed this 10 years ago. recommend nothing and thats from someone at cornell. when i went back this year, i tried to explain the pain and they offered me PT. i just saw a different PN doctor in nyc. he is recommending lyric or neurotin, neither of which i'm happy about but with the pain dont have much choice. i told him about the study at mass gen showing ivig or steriods and he said we can discuss but doesnt seem likely especially due to ivig cost. what interesting is my major pain is not in my hands or feet. i iget alot of internal buzzing all over . i get burning on and off throughout body. have started to get some minor tremors but being told its nothing or med related. sorry to run on but anyone have any ideas?@elained, @arcticmark, and @sdswoboda53 i hope posting your symbols gets me to you guys.

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Hi, @albiet – the @username construction you've used tags the members you mentioned so they know you are addressing them. Perfect. If you've not had the opportunity yet, do click on VIEW & REPLY when you get an email notification from Connect, so you can go onto the site and see the whole conversation.

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@johnbishop

Hi @boo55, welcome to Mayo Clinic Connect. You hit the nail on the head. Small fiber neuropathy is one big ick. I know it's not much consolation but you are not alone. I have idiopathic small fiber peripheral neuropathy. The neurologist thought it might be hereditary but no relatives close and it doesn't make much difference to know for the patient (in my non medical trained opinion). I'm not sure of other tests to determine the cause of the small fiber neuropathy but here is some information that may be helpful.

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

You mentioned you are prediabetic. Did your Dad have diabetes? The reason I ask was my sister had diabetes and was told they may have to amputate her foot at one time. She passed away several years ago but always struggled with foot problems due to her diabetes.

@jana59 and @boo55 – I take a protocol of over the counter supplements – vitamins and minerals that help me and has helped others but may or may not help you. I found it in a closed Facebook group. The group has a website with a link to join their Facebook group – http://solutions2pnpd.com/. You can read my story and how I found the group in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Hope you find some answers.

John

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I am new here and diagnosed with small fiber polyneuropathy. I DON'T have pain; my problem is that acetylcholine is not getting to my muscles which causes weakness in my arms and legs. I can't seem to find anything about this.

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Hi @pepperbeau, welcome to Mayo Clinic Connect. I have small fiber peripheral neuropathy also with no pain. I do have numbness in my feet and above the ankles in both legs and I have noticed muscle atrophy/weakness but I have assumed a lot of mine is due to age (75) and a few other things. I did find an interesting article discussing what I think you are asking.

Chapter 11: Acetylcholine Neurotransmission
https://nba.uth.tmc.edu/neuroscience/m/s1/chapter11.html

Have you discussed any treatments or therapy with your doctor that might help with the weakness in the arms and legs?

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@lauraj155

@albiet, the hydrocortisone was prescribed by my PCP. I am fairly sensitive to meds so I started at 2.5 mg. twice a day due to getting insomnia from them. I gradually increased the dosage to 10 mg. and took it in the morning. I used a compounding pharmacy. It really helped turn things around for me where nothing else I tried made that much difference in managing the pain. But, I had to taper very, very slowly over a few months. I tried to taper once too quickly which didn’t work as the pain increased. The other side effects taking it long term which you probably know are high blood pressure, osteopenia. It was such a low dose that it did not cause any weight gain or puffiness. It also helped with increased energy as I was so tired from the pain drain! -Laura

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laura, how long were you on it before tapering down. also, didnt you pain increase as you tapered down?

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Hello. I'm wondering if anyone with widespread small fiber neuropathy pain has received or heard about intravenous lidocaine infusions?

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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?

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@rwinney

Hello. I'm wondering if anyone with widespread small fiber neuropathy pain has received or heard about intravenous lidocaine infusions?

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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?

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@johnbishop

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?

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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?

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@azza1

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?

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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

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@johnbishop

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

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

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@affliction313

I was diagnosed with periphal neuropathy about a year ago. I am not diabetic or even close, I do not drink often maybe a drink once a month, I have had the elctro stuff done everything looked fine….numerous times blood work has been done. and they can not figure out a cause. I am only 42 and very active this has really changed my lifestyle. They have basically said we don't know why this is just going to be a nuisance for the rest of your life. I was on 1800 mg of gabapentin and that did nothing now I am on 400 mg of lyrica a day which doesn't seem to help either. All they keep saying is oh your a bigger guy it may take more medicine for it to work on you. I am trying to find a better answer than that is there any sort of doctors, clinics, ect. that specialize in this sort of thing?

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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

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@azza1

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

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

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@albiet

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

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I think Lyrica will be better than Gabapentin.

Liked by Leonard

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@azza1

I think Lyrica will be better than Gabapentin.

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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.

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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

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