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

Boo55, hi I am jana59 and I have the same type of situation! My mom past away from neuropathy and had pre diabetes. She was diagnosed with diabetes after her neuropathy got worse. I had all the symptoms of the same for many years. Now I have neuropathy in my feet and feel extreme sensitivity in my body! I am seeking a way to not have to suffer like my mom. I am trying to find a natural way to fight this. Did you have pre signs of this too?

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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

Liked by Mrs. H

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@jana59

Boo55, hi I am jana59 and I have the same type of situation! My mom past away from neuropathy and had pre diabetes. She was diagnosed with diabetes after her neuropathy got worse. I had all the symptoms of the same for many years. Now I have neuropathy in my feet and feel extreme sensitivity in my body! I am seeking a way to not have to suffer like my mom. I am trying to find a natural way to fight this. Did you have pre signs of this too?

Jump to this post

Hi, For many years I have had some numbness in my toes. Even had an EMG a few years ago that was negative .That Dr. dismissed my numbness as Raynauds. I am also looking for more natural ways to combat this stuff. I think keeping my blood sugar in check is the biggest hurdle for me.

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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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Thank you for the information. I appreciate your reply.

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Actually, at least with prediabetic neuropathy, there is some hope of managing it through diet. This is very good. There are so many causes of neuropathy, and this is a very common one. If yours is definitely caused by sugar, your doctor will manage it. If you watch yourself, you should do ok.

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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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@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?

Jump to this post

Hi,
It could very well be small fiber neuropathy. That will not show on emg, reg bloodwork .
You need a specialist in PN (small fiber) .
Idk where you are, maybe look for larger facility in your area.

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i am between cleveland, ohio and columbus….i have been to the cleveland clinic and recieved the same info

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@affliction313

i am between cleveland, ohio and columbus….i have been to the cleveland clinic and recieved the same info

Jump to this post

Ugh, I hear ya.
My experience is only mine. But I would find specialist, they can do punch skin biopsy acs some other tests and dif blood work.
I'm in ny, i'm waiting for my appt for punch skin Biopsy by only specialist in area outside of nyc.
None of the anti seizure meds worked for me.
I just started cymbalta last week and it does seem to help. I also use medical marijuana in oil form from licensed dispensary. As well as tramadol.
Maybe u can ask John who is one of the leaders here on this forum.
He seems to find a link for everything ! Which is great !
I hope this helps even a little. If nothing else, this mayo clinic forum confirms you are not alone by far.
The gas to be someone in all of ohio that can help you w this exceptional pain.
Best of luck,
Claire

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@clairecas

Ugh, I hear ya.
My experience is only mine. But I would find specialist, they can do punch skin biopsy acs some other tests and dif blood work.
I'm in ny, i'm waiting for my appt for punch skin Biopsy by only specialist in area outside of nyc.
None of the anti seizure meds worked for me.
I just started cymbalta last week and it does seem to help. I also use medical marijuana in oil form from licensed dispensary. As well as tramadol.
Maybe u can ask John who is one of the leaders here on this forum.
He seems to find a link for everything ! Which is great !
I hope this helps even a little. If nothing else, this mayo clinic forum confirms you are not alone by far.
The gas to be someone in all of ohio that can help you w this exceptional pain.
Best of luck,
Claire

Jump to this post

*there has to be

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I have no problem traveling outside the state to find someone that can help…..i have googled 100 diff ways to find someone and i keep getting home remedies and 5 ways to know you have this…..getting aggravated…..lol

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@affliction313

I have no problem traveling outside the state to find someone that can help…..i have googled 100 diff ways to find someone and i keep getting home remedies and 5 ways to know you have this…..getting aggravated…..lol

Jump to this post

Believe me, I understand more than I want to, as my hands and feet/legs are on fire most days /nights.
Please try addressing John Bishop or another leader for some help. They are great resources.

REPLY
@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

Jump to this post

@johnbishop 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?

Do you have any recommendations for my area or surrounding?

REPLY
@affliction313

@johnbishop 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?

Do you have any recommendations for my area or surrounding?

Jump to this post

Hello @affliction313, I understand your frustration about getting answers. That's one of the reasons Connect is a great source of information when we can share and learn what other members are doing for treatment. You might want to introduce yourself in the following discussion where you can meet other members and learn what they are doing for treatments.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I don't have any pain with my neuropathy so the drugs don't do anything for me. It's my understanding that the longer you are on these types of drugs, the more you will eventually have to take but I have no medical training or background so it's just what I've read. You can read my story and what helps me a little here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I wished I had an answer for your question – are there any sort of doctors, clinics, etc. that specialize in this sort of thing? A neurologist is the doctor that specializes in diagnosing neuropathy through testing, symptoms and physical exam.

Liked by Lisa Lucier

REPLY
@affliction313

@johnbishop 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?

Do you have any recommendations for my area or surrounding?

Jump to this post

I did not get help from 1st two neurologists. They never mentioned small fiber neuropathy.
You need some one who does. Maybe try asking your neuro for smallfiber pn specialist. Also try pain- management, they may know a referral for this type of neurologist.
Ask about punch skin biopsy as well.

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