1. < Neuropathy

B-6 vitamin danger!

Posted by Lynsorensen @lynsorensen, Dec 11, 2017

With the assistance of a neurologist at Mayo Clinic, I have almost completely eliminated the uncontrolled muscle spasms now. First and foremost: beware of taking multi-vitamin capsules that have B6 listed. B-6 overdosage (which is contained in every multivitamin I found in stores and on the internet) can cause loss of muscle control and spasms in some people. So can gluten found in many foods so now I am also gluten free. I now work out with a personal trainer 3 days a week and do water aerobics another 2 days. Got off gabapentin and also clonazepam. Using CBD oil capsules each morning (no more opioids or chemicals) and using a CBD topical ointment to rub on my leg muscles each night. He says I don't need him anymore! And I don't. No more shaking or muscle cramps or pain. Still a little numbness but that is receding also.

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

NJ Ed | @njed | Jan 12, 2023
In reply to @rosaliemarie "I took both those drugs and the side effects were terrible, especially the Lyrica. I tried..." + (show)
@rosaliemarie

I took both those drugs and the side effects were terrible, especially the Lyrica. I tried acupuncture a few years ago and I felt no relief. I do get monthly massages and she concentrates on my feet and they feel so good for about a day. Sadly, we live in a society where we want to take a pill and feel better, so, I think that is part of my frustration. I know that the more I move, the better I feel. My greatest fear is falling though.

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rosaliemarie - yes, same here and all the docs say is "don't fall"...not that easy. Right! I have had a few tumbles in my time and I also have drop foot so I have to wear walk-on-flex which helps with balance primarily prescribed for drop foot. I do better in warmer weather when best walking outside.

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NJ Ed | @njed | Jan 12, 2023
In reply to @dbeshears1 "I’m moving soon (again), back to a state I lived in when this PN started. I..." + (show)
@dbeshears1

I’m moving soon (again), back to a state I lived in when this PN started. I had a consult back then (6 yrs ago) with a Neurologist at the medical university hospital. Back then, she just reviewed what my local Neurologist had done, and advised a “watch and see what happens” back then. I lived 3 1/2 hours away from her so I couldn’t let her do the watching, especially since I was still in a wheelchair back then and overnight travel was an extreme physical (and financial) hardship for us. We then eventually ended up moving to another state. I’m actually moving to her part of that state now and decided to sign her up as my Neurologist. Maybe as my owner (partner) she’ll have ideas or final thoughts over the 6 year watch, but I’ll certainly ask the Gabapentin/Lyrica question, to get her medical university’s opinion on hurting vs helping PN types, as it seems those are the immediate drugs doctors throw at us. I’ll advise when I see her in 2 months.

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Deb- good luck with the neuro doc and yes her opinion would be interesting on how she feels about the gaba and lyrica. Like everything else, try this and see how you feel. I do see some get pain relief with the gabapentin so it can't be discounted. Just wasn't for me - did zero for numbness but it was worth the shot.

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Angie P. | @ancopau1998 | Jan 13, 2023

Hi all, I when I took Lyrica it made me swell in my feet real bad. When I took Gabapentin I became delirious and was saying all kinds of crazy things and kept picking in the air. So nothing for me as far as pills for my Neuropathy, I'm told nothing I can do about the numbness in my feet. I have no pain just the numbness. I thought about Acupuncture, if anyone gets relief please let us know! Thank You Angie and Good Luck!!

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1 reply
patrickski98 | @patrickski98 | Jan 13, 2023

I am six months post liver transplant and my PCP, with the transplant team’s concurrence, has “prescribed” B6 for the neuropathy in my legs/feet. There are spasms or shaking. Is B6 a risk under my circumstances? Thank you.

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1 reply
patrickski98 | @patrickski98 | Jan 13, 2023
In reply to @patrickski98 "I am six months post liver transplant and my PCP, with the transplant team’s concurrence, has..." + (show)
@patrickski98

I am six months post liver transplant and my PCP, with the transplant team’s concurrence, has “prescribed” B6 for the neuropathy in my legs/feet. There are spasms or shaking. Is B6 a risk under my circumstances? Thank you.

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Sorry. NO spasms.

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ceciilia | @ceciilia | Jan 13, 2023
In reply to @johnbishop "Welcome @rosaliemarie, Similar to what my Mayo neurologist told me after I was diagnosed with idiopathic..." + (show)
@johnbishop

Welcome @rosaliemarie, Similar to what my Mayo neurologist told me after I was diagnosed with idiopathic small fiber peripheral neuropathy. I only have numbness with my neuropathy and was told there are no drugs or topicals that help with numbness. Depending on your neuropathy symptoms, you might want to check out the list of treatments some people have found helps on the Foundation for Peripheral Neuropathy site here - https://www.foundationforpn.org/treatments/.

What symptoms do you have with your neuropathy?

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I was diagnosed with Peripheral Neuropathy due to stinging, numbness and pains in my legs from my knees down. My Podiatrist recently ordered
nerve testing in my legs and the Dr who did the testing from my knees down told me I DO NOT have neuropathy because my nerves are working well.
So now I am getting a back MRI again and have a Hx of Degenerative Joint disease L5 to S1 . Then I may need to see a Neurologist.
I the past I have tried Gabapentin with little results and stopped due to possible side effects and was prescribed Lyrical in past and refused to take due to
too many possible side effects.
I am looking forward to discovering what is causing my leg problems from my knees down.

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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 13, 2023
In reply to @ceciilia "I was diagnosed with Peripheral Neuropathy due to stinging, numbness and pains in my legs from..." + (show)
@ceciilia

I was diagnosed with Peripheral Neuropathy due to stinging, numbness and pains in my legs from my knees down. My Podiatrist recently ordered
nerve testing in my legs and the Dr who did the testing from my knees down told me I DO NOT have neuropathy because my nerves are working well.
So now I am getting a back MRI again and have a Hx of Degenerative Joint disease L5 to S1 . Then I may need to see a Neurologist.
I the past I have tried Gabapentin with little results and stopped due to possible side effects and was prescribed Lyrical in past and refused to take due to
too many possible side effects.
I am looking forward to discovering what is causing my leg problems from my knees down.

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Since you mentioned degenerative joint disease L5 to S1, do you think the neuropathy symptoms may be due to nerve compression in the spine? It might be good to discuss with the neurologist or doctor.

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1 reply
ceciilia | @ceciilia | Jan 14, 2023
In reply to @johnbishop "Since you mentioned degenerative joint disease L5 to S1, do you think the neuropathy symptoms may..." + (show)
@johnbishop

Since you mentioned degenerative joint disease L5 to S1, do you think the neuropathy symptoms may be due to nerve compression in the spine? It might be good to discuss with the neurologist or doctor.

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I am going to have a repeat MRI of my back to rule out nerve compression in my back. I had a back MRI when symptoms started with main problem of toes curling on both my feet. I took my disk of the MRI to a Orthopedic Back doctor who said your back doesn't require surgery and toe curling is neurologic .

My Podiatrist is aggressive appropriately in ordering tests and has been the most helpful.

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edsasfnf5 | @edsasfnf5 | Jan 14, 2023
In reply to @ceciilia "I was diagnosed with Peripheral Neuropathy due to stinging, numbness and pains in my legs from..." + (show)
@ceciilia

I was diagnosed with Peripheral Neuropathy due to stinging, numbness and pains in my legs from my knees down. My Podiatrist recently ordered
nerve testing in my legs and the Dr who did the testing from my knees down told me I DO NOT have neuropathy because my nerves are working well.
So now I am getting a back MRI again and have a Hx of Degenerative Joint disease L5 to S1 . Then I may need to see a Neurologist.
I the past I have tried Gabapentin with little results and stopped due to possible side effects and was prescribed Lyrical in past and refused to take due to
too many possible side effects.
I am looking forward to discovering what is causing my leg problems from my knees down.

Jump to this post

My I ask did you get a QSART test/Sweat test to rule out autonomic neuropathy? Reason why I ask is because that is another cause of sensory neuropathy symptoms. My docs were awesome informing me of this and exhausted all the possible causes.
I've just ended a 2 year journey of countless test with fast progressing symptoms that kept my Neurologists on there toes as I kept them up to date on changes. But in the end with all my MRI's, CT's, blood test (Vitamin/Antibody/Protein function/Glucose etc), EMG (large nerve/Muscle function/back involvement), and Skin Biopsy (Nerve & sweat gland Health/counts) was normal. The only test that wasn't was my QSART test (tests the electrical current in the nerves.) which resulted Autonomic Small Fiber Neuropathy. I suffer with fast progressing (Not Normal) sensory neuropathy like symptoms amongst multiple other weird symptoms. For me the weird symptoms started first until this past summer when I started with pins/needles/pain in both feet then it crawled up my legs in sections, to my hands, up my arms, still going. But everyone is different. I've been on gabapentin which doesn't work for me at all. I feel everything. As of now I'm on the med increase roll a coaster to pain free. Fingers crossed. I shared my sweat test failed photo. You can see a smidgit of electrical activity on 1 or 2 of them but pretty much flat line.
I hope you find out what the problem is soon.
REPLY
1 reply
NJ Ed | @njed | Jan 14, 2023
In reply to @edsasfnf5 "My I ask did you get a QSART test/Sweat test to rule out autonomic neuropathy? Reason..." + (show)
@edsasfnf5

My I ask did you get a QSART test/Sweat test to rule out autonomic neuropathy? Reason why I ask is because that is another cause of sensory neuropathy symptoms. My docs were awesome informing me of this and exhausted all the possible causes.
I've just ended a 2 year journey of countless test with fast progressing symptoms that kept my Neurologists on there toes as I kept them up to date on changes. But in the end with all my MRI's, CT's, blood test (Vitamin/Antibody/Protein function/Glucose etc), EMG (large nerve/Muscle function/back involvement), and Skin Biopsy (Nerve & sweat gland Health/counts) was normal. The only test that wasn't was my QSART test (tests the electrical current in the nerves.) which resulted Autonomic Small Fiber Neuropathy. I suffer with fast progressing (Not Normal) sensory neuropathy like symptoms amongst multiple other weird symptoms. For me the weird symptoms started first until this past summer when I started with pins/needles/pain in both feet then it crawled up my legs in sections, to my hands, up my arms, still going. But everyone is different. I've been on gabapentin which doesn't work for me at all. I feel everything. As of now I'm on the med increase roll a coaster to pain free. Fingers crossed. I shared my sweat test failed photo. You can see a smidgit of electrical activity on 1 or 2 of them but pretty much flat line.
I hope you find out what the problem is soon.

Jump to this post

Quick comment - I have axonal polyneuropathy and when I was at Mayo in MN in 2020, I had a ton of tests including the sweat test...that was a weird one! I left with sensorimotor diagnosis but lately, my sweating has been very abnormal, not in winter months. High levels of sweat when exertion in warm months mostly back of neck, head and chest. This started in early 2022.

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