1. < Neuropathy

Just Diagnosed with Small Fiber Neuropathy

Posted by boo55 @boo55, Feb 1, 2019

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

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Aug 26, 2021
In reply to @piross1528 "Hey Man, my name is Steve—I am 35 and have what they are calling “suspicious of..." + (show)
@piross1528

Hey Man, my name is Steve—I am 35 and have what they are calling “suspicious of SFN” so far everything looks normal regarding tests. My symptoms are not so bad yet but the is my second time having the feeling of needles in my skin. It’s rough. Also looking for answers and someone to talk to. I’m worried I’m going to be hit with the SFN idiopathic diagnosis—what’s the prognosis for that sort of thing?

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Hello Steve @piross1528, Welcome to Connect. It's normal to worry some about the unknown when it comes to a diagnosis for a condition you don't know much about. There is another discussion where members have shared their neuropathy journey and what helps them that you may want to read through some of the posts.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

I had my neuropathy 20+ years before seeking a diagnosis and then when I found out I had idiopathic small fiber peripheral neuropathy, I was back to square one - they didn't have a treatment that could help the numbness in my legs and feet. The prognosis is an unknown but if it were me, I would just start learning as much as you can about your condition and what options for treatment you have. Also, there are a lot of companies out there with products claiming to cure neuropathy. I'm a not a doctor or medical professional but can tell you from all my research that there is no cure for neuropathy but there are a lot of options to help with the symptoms of pain, tingling and overall misery.

I would bookmark these two sites to learn more about neuropathy.
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

You mentioned they are calling your diagnosis "suspicious of SFN". Do you mind sharing more of what tests you've had to diagnose the neuropathy?

REPLY
doctorshelley | @doctorshelley | Sep 2, 2021

I have SFN as well with unrelenting pain. My second neurologist rec I try Mayo Clinic for a tertiary consult. This disease is a long road with basically no easy fixes. I have positive FGFR3 antibodies but no one seems to care about it.

REPLY
doctorshelley | @doctorshelley | Sep 2, 2021
In reply to @nlangmack "26 yo, Female. I was diagnosed with SFN through punch biopsy in the last year. My..." + (show)
@nlangmack

26 yo, Female. I was diagnosed with SFN through punch biopsy in the last year. My symptoms are non-typical for SFN - no burning pain, just extreme hypersensitivity sensitivity everywhere on my body to materials/fabrics. Materials that normal people aren't annoyed by feel like a scratching sensation on my skin that drives me crazy. Can't tolerate most clothing, and the seams on clothing are the WORST. The pain NEVER changes day-to-day, it just increases one level randomly each year. I'm barely able to wear any types of clothing anymore. I have ADHD, anxiety, exercise-induced asthma, acne, allergies, anemia, acid reflux, eustachian tube dysfunction, folliculitis, neuromas in both feet, and right now a lot of fatigue and high copper levels (likely unrelated to SFN though, working with a hepatologist to figure this out). Also take thyroid medication to tweak thyroid levels, even though they aren't out of range - since I'm only 26 just trying to get closer to what a normal 26 year old would have. Treating the anemia and hypothyroid and other conditions doesn't help the SFN at all. I've taken Lyrica, Vitamin B12 shots, Gabapentin, Abilify, Cymbalta, Trileptal, Clonidine, Desipramine, Naltrexone, Lamotrigine, Memantine, Mexiletine, Ketamine, Buprenorphine, Nortriptyline, Tizanidine, Tramadol, Lamictal, and had TMS (Transcranial Magnetic Stimulation) therapy. Starting to run out of meds to try. I'm ANA positive with RNP antibodies, have minor signs of Sjogrens but negative Sjogrens antibodies, high C50 but normal C3 and C4 complements, glucose at 90-100 usually, A1c at 5.6%, so borderline pre-diabetic but not enough for a diagnosis. Working with Stanford Autonomic Disorder program for some more antibody testing to see if we can find a cause. I'd really prefer not to run out of options and have to take opioids the rest of my life, but it's pretty terrifying to have the disease already in an extremely bad state when I'm only in my 20s. Any additional medication/treatment suggestions welcome. I would need a formal autoimmune diagnosis to get IVIG covered.

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I have the same issue with socks especially.

REPLY
janstar61 | @janstar61 | Sep 4, 2021
In reply to @nlangmack "26 yo, Female. I was diagnosed with SFN through punch biopsy in the last year. My..." + (show)
@nlangmack

26 yo, Female. I was diagnosed with SFN through punch biopsy in the last year. My symptoms are non-typical for SFN - no burning pain, just extreme hypersensitivity sensitivity everywhere on my body to materials/fabrics. Materials that normal people aren't annoyed by feel like a scratching sensation on my skin that drives me crazy. Can't tolerate most clothing, and the seams on clothing are the WORST. The pain NEVER changes day-to-day, it just increases one level randomly each year. I'm barely able to wear any types of clothing anymore. I have ADHD, anxiety, exercise-induced asthma, acne, allergies, anemia, acid reflux, eustachian tube dysfunction, folliculitis, neuromas in both feet, and right now a lot of fatigue and high copper levels (likely unrelated to SFN though, working with a hepatologist to figure this out). Also take thyroid medication to tweak thyroid levels, even though they aren't out of range - since I'm only 26 just trying to get closer to what a normal 26 year old would have. Treating the anemia and hypothyroid and other conditions doesn't help the SFN at all. I've taken Lyrica, Vitamin B12 shots, Gabapentin, Abilify, Cymbalta, Trileptal, Clonidine, Desipramine, Naltrexone, Lamotrigine, Memantine, Mexiletine, Ketamine, Buprenorphine, Nortriptyline, Tizanidine, Tramadol, Lamictal, and had TMS (Transcranial Magnetic Stimulation) therapy. Starting to run out of meds to try. I'm ANA positive with RNP antibodies, have minor signs of Sjogrens but negative Sjogrens antibodies, high C50 but normal C3 and C4 complements, glucose at 90-100 usually, A1c at 5.6%, so borderline pre-diabetic but not enough for a diagnosis. Working with Stanford Autonomic Disorder program for some more antibody testing to see if we can find a cause. I'd really prefer not to run out of options and have to take opioids the rest of my life, but it's pretty terrifying to have the disease already in an extremely bad state when I'm only in my 20s. Any additional medication/treatment suggestions welcome. I would need a formal autoimmune diagnosis to get IVIG covered.

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My son is in his 20s and developed SFN as a result of taking 2 doses of Humira. He is so traumatized by this situation and so are we. You are no longer able to sue the darn drug company as a result of this which I think is criminal since the mention of it was not stated to him when his doctor was reading off the side effects.

REPLY
janstar61 | @janstar61 | Sep 4, 2021
In reply to @piross1528 "Hey Man, my name is Steve—I am 35 and have what they are calling “suspicious of..." + (show)
@piross1528

Hey Man, my name is Steve—I am 35 and have what they are calling “suspicious of SFN” so far everything looks normal regarding tests. My symptoms are not so bad yet but the is my second time having the feeling of needles in my skin. It’s rough. Also looking for answers and someone to talk to. I’m worried I’m going to be hit with the SFN idiopathic diagnosis—what’s the prognosis for that sort of thing?

Jump to this post

I have had that diagnosis for almost 10 years now. I actually moved to AZ because the dry hot climate seems to help. I have tried I think, almost everything, and the only thing that works for me is pregabalin and a low dose opioid patch. It allows me to function. I would say I have been stable the past 3 years.

REPLY
janstar61 | @janstar61 | Sep 4, 2021
In reply to @albiet "thank you laura. how does steroids work.? what have been the side effects for you? are..." + (show)
@albiet

thank you laura. how does steroids work.? what have been the side effects for you?
are they taken for a long time or just a short course/when i looked at the mass general/harvard research it looked like out patients got 1mg/kg/day x 4 weeks then a brief taper.

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Be careful of using steroids long term. They can affect your organs. My neurologist said my SFN is not due to inflammation so prednisone or any type of steroid would not help.

REPLY
retired123 | @retired123 | Sep 5, 2021

It seems most people with SFN talk about pain. I've never had pain. My symptoms are tingling and such tightness in the foot arch and the outside ankle that my balance is compromised and I don't feel my feet properly to walk. It is like trying to walk while your feet are asleep. The tingling is overwhelming and can travel up the legs. Currently I have assistance walking and cannot drive. Is this the same for anyone else and what is your treatment? Thank you.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Sep 5, 2021
In reply to @retired123 "It seems most people with SFN talk about pain. I've never had pain. My symptoms are..." + (show)
@retired123

It seems most people with SFN talk about pain. I've never had pain. My symptoms are tingling and such tightness in the foot arch and the outside ankle that my balance is compromised and I don't feel my feet properly to walk. It is like trying to walk while your feet are asleep. The tingling is overwhelming and can travel up the legs. Currently I have assistance walking and cannot drive. Is this the same for anyone else and what is your treatment? Thank you.

Jump to this post

Hello @retired123, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I have idiopathic small fiber peripheral neuropathy with only numbness and some tingling but no pain. I also have to wear compression socks which makes the tingling a little worse but so far at 78 I can still drive and walk but not very far. My walking problem is more to do with my lower back and having what I think is bent spine syndrome (BSS) which makes it difficult to stand up straight when walking and I tend to lean forward. I shared my story and what has helped me in the Member Neuropathy Journey discussion here: https://connect.mayoclinic.org/comment/310341/

There is another discussion which you might find helpful - Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

Awhile back I saw a new device for people with diabetic neuropathy that helped them walk. The researchers came and talked to us at one of our Minnesota Neuropathy Association meetings before they had FDA approval and it was still under development - https://rxfunction.com/. It sounds like it could help a lot of people with symptoms similar to yours.

What type of walking assistance do you currently use?
https://youtu.be/J2OZczG_72E

REPLY
1 reply
retired123 | @retired123 | Sep 5, 2021
In reply to @johnbishop "Hello @retired123, Welcome to Connect, an online community where patients and caregivers share their experiences, find..." + (show)
@johnbishop

Hello @retired123, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I have idiopathic small fiber peripheral neuropathy with only numbness and some tingling but no pain. I also have to wear compression socks which makes the tingling a little worse but so far at 78 I can still drive and walk but not very far. My walking problem is more to do with my lower back and having what I think is bent spine syndrome (BSS) which makes it difficult to stand up straight when walking and I tend to lean forward. I shared my story and what has helped me in the Member Neuropathy Journey discussion here: https://connect.mayoclinic.org/comment/310341/

There is another discussion which you might find helpful - Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

Awhile back I saw a new device for people with diabetic neuropathy that helped them walk. The researchers came and talked to us at one of our Minnesota Neuropathy Association meetings before they had FDA approval and it was still under development - https://rxfunction.com/. It sounds like it could help a lot of people with symptoms similar to yours.

What type of walking assistance do you currently use?
https://youtu.be/J2OZczG_72E

Jump to this post

Thank you for your information. I will look into all of it. In your post you mentioned a list of supplements and vitamins that have helped you. Could you share it, please? Thank you.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 5, 2021
In reply to @retired123 "Thank you for your information. I will look into all of it. In your post you..." + (show)
@retired123

Thank you for your information. I will look into all of it. In your post you mentioned a list of supplements and vitamins that have helped you. Could you share it, please? Thank you.

Jump to this post

There is a discussion on the supplements here - https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

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