Low B12 and Neuropathy Flare Up

Posted by dbchip @dbchip, Oct 16 6:52am

Recently I had my six month visit with my Neurologist. I am currently experiencing a pretty bad flare up of my Idiopathic Neuropathy. She reran my blood work and I noticed that my B12 level was 258. It is in the normal range, but I thought I read that levels like that could be a factor in an increase in neuropathy symptoms. My doctor didn’t seem too concerned about it and said I could take a supplement if I like. After doing some more research I have found that lower end B12 levels can contribute to flare ups. Going to start taking some supplements to see if it helps. Anyone have a similar experience and thoughts they can share about B12?

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John, Volunteer Mentor | @johnbishop | Oct 16 7:30am

@dpchip, I don't have the pain with my idiopathic small fiber peripheral neuropathy but do have the numbness and some tingling. There is an older discussion that might be helpful while you wait for others to respond.
-- Vitamin B12 and Neuropathy: https://connect.mayoclinic.org/discussion/vitamin-b12-and-neuropathy/

Here are some references I posted in the discussion above to learn more about Vitamin B12 and other B vitamins in relation to neuropathy.

B Vitamins for Neuropathy and Neuropathic Pain
https://www.omicsonline.org/open-access/b-vitamins-for-neuropathy-and-neuropathic-pain-2376-1318-1000161.php
B6 section it explains -- too much or too little gives neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/
FDA Safety Alert: Biotin Can Affect Medical Test Results
http://cle.clinic/2G6Mp4y
NIH - Nutritional Neuropathies
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

Vitamin B6 Toxicity Revisited: A Case of Reversible Pyridoxine-associated Neuropathy and Disequilibrium. (P4.021)
-- http://n.neurology.org/content/90/15_Supplement/P4.021

I take 8000 mcg daily of B12 Methylcobalamin as one of my supplements for neuropathy. I posted my neuropathy story in the Members Neuropathy Journey Stories discussion here - https://connect.mayoclinic.org/comment/310341/.

dbchip | @dbchip | Oct 16 9:44am

In reply to @johnbishop "@dpchip, I don't have the pain with my idiopathic small fiber peripheral neuropathy but do have..." + (show)

@johnbishop thanks so much!!!

Okay Now What | @okaynowwhat | Oct 17 12:03pm

Be very careful if you have heart conditions. My cardiologist asked me to stop taking B12 supplements because it throughs off certain blood tests.

lilli64 | @lilli64 | Oct 17 1:56pm

In reply to @dbchip "@johnbishop thanks so much!!!" + (show)

@dbchip how do they test for small fiber peripheral neuropathy? I have neuropathic pain in my legs , my Dr's blame it on Fibromyalgia, but I feel it's more than that?

dbchip | @dbchip | Oct 17 2:43pm

Mine was confirmed by my symptoms and EMG/NCS. No need for a skin biopsy, but that is another test they can do

suetex | @suetex | Oct 17 4:30pm

My SFN (0 fibers, 0 fibers and 8 fibers in shoulder) had no sensory effect what-so-ever. I find that very puzzling. Any thoughts?

jamessaxo | @jamessaxo | Oct 17 6:09pm

In reply to @lilli64 "@dbchip how do they test for small fiber peripheral neuropathy? I have neuropathic pain in my..." + (show)

@lilli64
I renewed eroded trigeminal nerve by taking 25 micro grams methl cobalamin daily. And stopping ALL alcohol. Look up how alcohol shuts millions of small intestine pores. B12 can't get in to blood steam. B12 makes new blood cells AND myelin. That's med. name for nerve insulation.
James

loriesco | @loriesco | Oct 18 5:35pm

In reply to @johnbishop "@dpchip, I don't have the pain with my idiopathic small fiber peripheral neuropathy but do have..." + (show)

@johnbishop OH MY GOD - I just found something and I don't know what it means yet. But I searched here and no one mentioned IRON! So I've been taking B12 for 4 years? Injections every two weeks or month PLUS supplementation (Vitamin Code Raw for women) PLUS I took nutrition in college and I EAT PROPERLY. Fresh fruits, veggies, blah, blah...
I've had radiculopathy for years and now neuropathy in my left leg from damaged spinal nerves compressed for too many years. But, the neuropathy kinda vanished when I went to eating a couple eggs PLUS glycinated iron pills, plus the B12 injection. I think I was low on iron! I don't know which is coming first - the B12 isn't doing its job or the blood cells are doing theirs. But in all the info here -- no one mentioned iron deficiency! I looked it up: https://pubmed.ncbi.nlm.nih.gov/30881284/
Saw my doctor on Thursday, and she was amazed that no one had ever looked at my pain in relation to not processing proteins correctly, so we are going to do some new labs. I am very excited. I am 68 and have been suffering this year with undiagnosed neuropathy pains. The cortisone injections last for a week and then all the pains return. I am SO excited that I am on to something, I want to scream it from the rooftops! I didn't know who to tell! Will you pass it on to mentor Rachel? I saw some comments she made about Neuropathy. Didn't know how to call her out.

loriesco | @loriesco | Oct 18 5:36pm

that is way low. Under 300 is low. I have problems with fatigue when I get down to 400.

John, Volunteer Mentor | @johnbishop | Oct 18 6:39pm

In reply to @loriesco "@johnbishop OH MY GOD - I just found something and I don't know what it means..." + (show)

@loriesco To make sure another member sees your post just add their member name. Rachel @rwinney should receive an email notification for my post here and can see your post that I am responding to.

It’s great to hear that you now have something that’s helping. Shouting out to the rooftops is allowed!