1. < Neuropathy

Small fiber neuropathy?

Posted by Nemo1 @nemo1, Feb 16 9:00pm

I never had a biopsy to dx it. I’m wondering if I have the biopsy does it make a difference in the therapies? A year ago I was dx’d with severe chronic nerve damage in lumbar and cspine: polyradiculopathy.

I have severe pain and spasms in lumbosacral back, legs and feet since 2021.

In the summer of 2023 I started (an continue having) get spasms in the trapezeous muscles on the right.

I’m currently flaring with bad pains to both shoulder that is crippling then after a long while it disappears. I developed lightning like pains to the bottoms of my feet and toes. The only thing that seemingly helps the surface pain is the lidocaine cream I apply. So far…

The neuromuscular doctor said last year no long fiber neuropathy per the nerve conduction study. She said I’d need a biopsy to determine if i have sfn.

An old nerve doctor said I had demyelination in left leg she thought secondary to diabetes. WEll, the diabetes hasnt climbed to damaging enough numbers to put me in flair much less cause the demyelination.

The foot dr last week gave referral for feet, for neuropathy and balance. So this confuses me. It all does.

I’d like to know if SNF can move around the body and cause the tingling in forarms and fingers and can the pain in SNF affect the very surface of the skin?

If someone can make sense of what Ive written I’d appreciate any help insight or feedback.

I have not received a diagnosis regarding the polyradiculopathy. I’m going to press the doctors for answers now because it’s really out of control.

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

smutchler | @smutchler | Mar 4 1:20pm

I have found the video in this link by Dr. Oaklander to be very helpful to understanding my SFPN from B6 toxicity.
https://understandingb6toxicity.com/b6-toxicity/small-fiber-polyneuropathy/

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julbpat | @julbpat | Mar 5 7:58am
In reply to @debduh11 "I get my decompression first. Then I lay on that rolling table with ice under my..." + (show)
@debduh11

I get my decompression first. Then I lay on that rolling table with ice under my lower back (feels wonderful). After that I get on the chiropractic table face down and the doctor uses some sort of 2 pronged device up and down my spine (that hurts). He uses a handheld vibrating massager up and down both sides of my spine and butt cheeks hitting trigger spots and then I'm done until tomorrow. This is all for my spinal decompression which should see if issues are related to my neuropathy.

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That sounds like a great treatment session, more than just a chiropractic adjustment. Glad you have such a great chiropractor. I’ve been to a few, including one that only focused on spinal alignment. He had one of those drop tables. There was a steady stream of patients in the waiting room. One scheduled every 15 minutes. Sometimes he was over an hour behind. At the time I thought it was good treatment, but I’ve learned now he was very limited in what he did. Although it was helpful with simple alignment issues.

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1 reply
proteusx | @proteusx | Mar 5 10:32am
In reply to @debduh11 "I have had a punch biopsy and a lower limb nerve conductive study performed by neurologists...." + (show)
@debduh11

I have had a punch biopsy and a lower limb nerve conductive study performed by neurologists. I also have a number of MRIs of my cervical, lumbar and sacral areas. Right now with the decompression, we will see how much of this pain is attributed to my herniated disks, and how much the pain, tingling and numbness in all extremeties is due to neuropathy.

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Keep us posted on your decompression experience. Compressed nerves can, of course, cause peripheral neuropathies but the typical idiopathic PN follows more predictable patterns than any neuropathy that might be the result of bulging or herniated discs in the extremities. I am trying to sort out the same situation, as I have multiple bulging discs from my cervical spine down to and including the lumbar spine. I suspect, however, that my PN has the more typical etiology which, at base, is mitochondrial dysfunction, leading to endothelial dysfunction, neuronal/axonal dysfunction, for which treatment remains elusive.

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debduh11 | @debduh11 | Mar 5 2:00pm

I let you all know how it goes! Thanks for your response!

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debduh11 | @debduh11 | Mar 5 4:38pm
In reply to @julbpat "That sounds like a great treatment session, more than just a chiropractic adjustment. Glad you have..." + (show)
@julbpat

That sounds like a great treatment session, more than just a chiropractic adjustment. Glad you have such a great chiropractor. I’ve been to a few, including one that only focused on spinal alignment. He had one of those drop tables. There was a steady stream of patients in the waiting room. One scheduled every 15 minutes. Sometimes he was over an hour behind. At the time I thought it was good treatment, but I’ve learned now he was very limited in what he did. Although it was helpful with simple alignment issues.

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Thanks for your response!

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celia16 | @celia16 | May 24 5:40am
In reply to @smutchler "Small Fiber Poly Neuropathy can be caused by vitamin B6 Toxicity. B6 Toxicity is caused by..." + (show)
@smutchler

Small Fiber Poly Neuropathy can be caused by vitamin B6 Toxicity. B6 Toxicity is caused by excess B6 accompanied by a dehydrating event. Thus, the excess is not excreted in our urine. I was taking 100mg of B Complex. There was 5,887% RDA of B6. Same symptom tingling, pins and needles, numbness weakness in lower legs up to my knee. It was idiopathic with no other reason.
understandingb6toxicity.com

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Did you test B6 level yourself? Do you know why it was high?

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smutchler | @smutchler | May 24 6:47am

B6 level high because I was taking a B Complex for 4 months with 100 mg B6 which is 5, 887% of the RDA of B6. Your doctor can order a B6 bloodtest or you can use Walk-in Labs to check your serum level. Serum levels can be in the normal range within 3 weeks of quitting supplements. This is because the excess B6 accompanied by a dehydrating event was stored in muscles and nerves causing small fiber polyneuropathy. It can take a year to two years to eliminate the toxicity from muscles and nerves.
https://www.walkinlab.com

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1 reply
celia16 | @celia16 | May 24 12:56pm
In reply to @smutchler "B6 level high because I was taking a B Complex for 4 months with 100 mg..." + (show)
@smutchler

B6 level high because I was taking a B Complex for 4 months with 100 mg B6 which is 5, 887% of the RDA of B6. Your doctor can order a B6 bloodtest or you can use Walk-in Labs to check your serum level. Serum levels can be in the normal range within 3 weeks of quitting supplements. This is because the excess B6 accompanied by a dehydrating event was stored in muscles and nerves causing small fiber polyneuropathy. It can take a year to two years to eliminate the toxicity from muscles and nerves.
https://www.walkinlab.com

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Hmmmm…..now, I’m wondering about my formerly low B12 that went very high after injections. Then, stopped injections…should be down now…..? Had tingling, feet numbness, hands numb during night, left almost completely, then returned….now subsiding again. Very odd. Dr. says not neuropathy. Anyway. Had burning. That left. No other pain. Guess I need to check current levels of B. Now taking low dose of B12 orally.

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1 reply
smutchler | @smutchler | May 24 1:11pm
In reply to @celia16 "Hmmmm…..now, I’m wondering about my formerly low B12 that went very high after injections. Then, stopped..." + (show)
@celia16

Hmmmm…..now, I’m wondering about my formerly low B12 that went very high after injections. Then, stopped injections…should be down now…..? Had tingling, feet numbness, hands numb during night, left almost completely, then returned….now subsiding again. Very odd. Dr. says not neuropathy. Anyway. Had burning. That left. No other pain. Guess I need to check current levels of B. Now taking low dose of B12 orally.

Jump to this post

Here is some info from the understandingb6toxicity.com website on B6 and B12.
https://understandingb6toxicity.com/b6and/vitamin-b12/

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judithlynne | @judithlynne | May 25 9:38am

I am so compassionate for what you are going through. I have extremely painful SFN in my feet which I feel has spread to 2 other areas as well as peripheral neuropathy and a bulging disc, osteoarthritis and a torn rotator cuff and 2 torn meniscus. Gabapentin caused severe edema so I can't do pregabalin and I can't do Lyrica. It's extremely debilitating especially at night trying to sleep with so much pain with the SFN. I take 50mg of CBD 4-5 times a day which can take the edge off somewhat. But when I lay down the small fiber neuropathy pain is a 10 out of a 10. On Amazon you can buy these socks that have gel inserts that you put in the freezer and basically I freeze my feet so I can fall asleep and I take 5mg of THC in the CBD to knock my myself out so I can fall asleep. If you try CBD you want the full entourage effect which includes CBG and especially CBN which is supposed to help you sleep. I usually wake up two times and have to take more because the pain for SFN is unbearable and then I need to get a different pair of the frozen socks. I never had any Neuropathy issues before taking the Covid vaccines and all the boosters recommended. The pharmacist said there are stories of the vaccines causing SFN. I didn't even prompt her with that theory of a relationship with SFN and the Moderna Covid vaccines but I have intuitively felt that that's what happened with me. I had extremely painful side effects from all the vaccines. I guess it doesn't much matter now. I just wish there was either a cure or a non-anti-anxiety pain relief cream or pill for SFN. My neurologist had mayo pharmacy compound creams for me but because of the gabapentin it made it worse because it created more edema. I guess they can compound with ketamine cream but I don't want to go on psychedelic journey. Has anyone tried that? I don't want to take anything that affects cognition. and finally there are so many supposed "miracle" cures on the Internet especially Instagram and Facebook. Has any of those worked for anyone?

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