1. < Neuropathy

Vitamin B12 and Neuropathy

Posted by lorirenee1 @lorirenee1, Dec 9, 2019

I went to my Neurologist and saw the nurse, because my neurologist had to cancel all her appointments. The nurse went thru all my blood work, and said my B12 is way too low for someone with Neuropathy. She repeated that B12 test, and again it is low. Because it is in a low, but normal range, 2 neurologists, 2 pain specialists, and 1 primary care physician of mine, did not catch that it was low. Only this nurse did, and now I need a week of daily Vitamin B12 shots, and then weekly, for a month. If you have neuropathy, B12 level should be at least at 400. Mine is at 185. I am praying Vitamin B12 helps. I really know nothing about Vitamin B12. Just found out mine is way too low for neuropathy. These doctors need to read the actual numbers, not just the highlights of what blood work is out of range. Maybe this could have been caught 2 years ago. I don't know if Vitamin B12 will help, but I am giving it a try. We all go thru so much.... Lori Renee

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lorirenee1 | @lorirenee1 | Jan 1, 2020
In reply to @rwinney "Correct, those areas only but, has not touched the neuropathy damage. I'm told that means the..." + (show)
@rwinney

Correct, those areas only but, has not touched the neuropathy damage. I'm told that means the damage wasn't caught early enough. Orrrr, it's all a just one big farce. Hah, we'll never know. I'm going with... a Major in Idiopathic and a Minor in B12 deficiency. Haha

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@rwinney Rachel, I'm going with it's all a major crapshoot, and the doctors know its a major crapshoot. They do the best they can. Just no advances in this painful disease!!!! In the meantime, try to have the best New Year. Lori

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 1, 2020
In reply to @jakedduck1 "@rwinney Wow, so the increase really helped you. I have had a B-12 shot occasionally but..." + (show)
@jakedduck1

@rwinney
Wow, so the increase really helped you.
I have had a B-12 shot occasionally but never on a regular basis. I’m going to ask my doc to test me. Maybe then I can find out if I’m deficient in B-12 or just lazy.
Thanks for the information @rwinney.
Jake

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No problem.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 11, 2020

Hi Lori Renee
Thinking of you and wondering how you're doing?Have you noticed any changes with b12 supplementation?
Rachel

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tdsrv | @tdsrv | Aug 13, 2021

I have been a diabetic for 50 years and for the last 15 years I have been taking an expensive B supplement and wondering if I just took a normal over the counter vitamin B supplement would It suffice my need? My neuro Doctor told me that just a normal over the counter would suffice if I had a deficiency and now I was just wasting my money. My neuropathy tested medium and not severe just last week.

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revfluegel | @revfluegel | Sep 12, 2021

Where do you get the information on Vitamin B12 levels for those of us with neuropathy? Mine level is on the low normal. In the past when I was taking vitamin supplements my B levels where high and I stopped taking them. Now I am taking cyanocobalamin (B12) 1,000 mcg daily.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 12, 2021
In reply to @revfluegel "Where do you get the information on Vitamin B12 levels for those of us with neuropathy?..." + (show)
@revfluegel

Where do you get the information on Vitamin B12 levels for those of us with neuropathy? Mine level is on the low normal. In the past when I was taking vitamin supplements my B levels where high and I stopped taking them. Now I am taking cyanocobalamin (B12) 1,000 mcg daily.

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Hello @revfluegel, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Here are some references 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?aid=90896
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/.
Are you able to share a little more about your neuropathy diagnosis and any treatments you have tried?

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loujentez3 | @loujentez3 | Jan 22, 2023
In reply to @rwinney "Hi Lori Renee I'm sorry to hear of your b12 blood work and confused as to..." + (show)
@rwinney

Hi Lori Renee
I'm sorry to hear of your b12 blood work and confused as to why it was allowed to get so low. Have you been diagnosed with Small Fiber Neuropathy already? Can't remember what type of neuropathy you have.
B12 deficiency caused my SFN. Never before did I know the importance of b12 and it's life altering, permanent effects. So sad that Drs don't make this is monitored priority especially for neuropathy patients.
My # was 212 when I testeed while looling for an underlying cause. Did weekly injections then every 2 weeks for 6 months until my b12/methylmelonic levels were average. Now to maintain, I take 3,000 mcg oral b12 daily.
Good luck on this next bit. You will level out but the question is whether more nerve damage has been done. My fingers are crossed for the answer to be no because it was caught early.
Rachel

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hi lori iwas so sick years ago i was lucky to find a kind kind doctor who treated me for no money i was a single mom of 3 and had no insurance at work i could barely stand the dr did blood work and my vitamin b12 was so low he put me on vitamin b12 shots my neighbor was a nurse and then she showed me how to give myself the shot easy to do but you hsve to know how to do it back then i also had lymes disease had all the symtoms but all my testt came out negative it wasnt until a few years ago that the test came out positive so between the lymes and my vitamin b12 being so low that is what caused the sfn iread it in the booklet after i had the skin test done the neurologist told me two or three times there is nothing to do for it was very impatient to get off the phone with me i ordered nerve pain relief on the internet never recieved it how horrible that people will scam you when you are in so much pain couldnt find the website so im afraid to order anything even vitamins i take pain meds for the burning pain in my legs but it does nothing for the weakness i have some better days i wonder if it goes into a type of remission but it doesnt last everything is an effort i keep praying for a cure or meds that can really help thanks for the info

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