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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Mentor
Rachel, Volunteer Mentor | @rwinney | Dec 30, 2019
In reply to @marazion "There is a lot of pain, and anxiety on this "thread." There is also evidence of..." + (show)
@marazion

There is a lot of pain, and anxiety on this "thread." There is also evidence of people determinedly searching for answers. I do not claim to know the answer to the question of the relationship between B12 and Neuropathy but I honestly think that some people are putting too much reliance upon B12 as a clue as to why they experience their neuropathy like symptoms. B12 defficiency is rare, being on the low end of the normal range for B12 levels is NOT the same as a B12 defficiency. Some of the dose levels cited on this "thread" are horrendously high. Luckily B12 is water soluble so well over 90% of your B12 supplements are excreted in your urine and harms your wallet not your body. Statistically you are more likely to need to drink more water than to need mega doses of B12. Having said that IF you actually do need B12 supplements you should take it in a form that is free of impurities and readily bioavailable. There are some excellent articles on B12 on HEALTHLINE.COM among other sites but it might be that instead of focussing on B12 some of us would be better served by reducing our anxiety levels and increasing our overall wellbeing? This is more likely to be achieved by exercise, diet control, meditation and mindfulness than by any "magic bullet" be it a megadose of B12 or a so called "nerve tonic."

On a lighter note some 70 years ago in the East End of London, my Aunt who,suffered from "bad nerves" was told by her Doctor to drink brown ale (for nutritional purposes.) She did....and she lived to be 95 ....because of the ale or despite it!

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I reserve skepticism of my neurologists final conclusion that I was deficient as the root of my small fiber poly neuropathy. Nothing else showed up so, there you have it, I guess. I will say this however, my body experienced an exhaustion and depletion like never before. I could not explain why making my daughters lunch left me ass out on the floor. Just one simple example. With supplementation I regained my abilities in this area. Again, each person is different and how we respond is different. B12 numbers are simply guidelines.
Be well and thank you for your input.
Rachel

REPLY
lorirenee1 | @lorirenee1 | Dec 30, 2019
In reply to @rwinney "Well presented thoughts. I enjoy reading your posts although they are at your expense and I'm..." + (show)
@rwinney

Well presented thoughts. I enjoy reading your posts although they are at your expense and I'm sorry for that. It's always interesting to learn and understand others perspectives on their health issues, meds, Drs, etc... The more we open our minds to hear others concerns, observations and experiences, the more knowledge we may gain. Whether it's useless to us remains our decision but so productive to keep doors open and not closed. Your posts have brought to attention some issues that I struggle with such as sensitivities to light sound smell. Of course I have mitigating circumstances, like most, which blur the lines... cornea disease, chronic migraine, small fiber poly neuropathy and a handful of bulging/herniated discs in neck and back. Soooooooo, there you have it. Crap!
Anyway I just wanted to say thanks for sharing your story, allowing me to learn and continue my acceptance of circumstance. Have a nice day and I hope you enjoy your dog walking! Take care.
Rachel

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@rwinney @goldleaf @marazion Hi, folks. Lori Renee, here. I am so taken in by all that you say. All of you write eloquently, logically, emotionally.....I feel that I cannot even add to what has been said. However, I just care. You all have worked so hard to be ok. Just not to suffer. I was innocent of human suffering for most of my life, thank God. I am just so touched by all of you. Such courage, determination, tenacity, intelligence.....God bless all of you. I just do not have more words. Lori Renee

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Dec 30, 2019
In reply to @lorirenee1 "@rwinney @goldleaf @marazion Hi, folks. Lori Renee, here. I am so taken in by all that..." + (show)
@lorirenee1

@rwinney @goldleaf @marazion Hi, folks. Lori Renee, here. I am so taken in by all that you say. All of you write eloquently, logically, emotionally.....I feel that I cannot even add to what has been said. However, I just care. You all have worked so hard to be ok. Just not to suffer. I was innocent of human suffering for most of my life, thank God. I am just so touched by all of you. Such courage, determination, tenacity, intelligence.....God bless all of you. I just do not have more words. Lori Renee

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Takes one to know one. 😊

REPLY
1 reply
iceblue | @iceblue | Dec 30, 2019
In reply to @marazion "There is a lot of pain, and anxiety on this "thread." There is also evidence of..." + (show)
@marazion

There is a lot of pain, and anxiety on this "thread." There is also evidence of people determinedly searching for answers. I do not claim to know the answer to the question of the relationship between B12 and Neuropathy but I honestly think that some people are putting too much reliance upon B12 as a clue as to why they experience their neuropathy like symptoms. B12 defficiency is rare, being on the low end of the normal range for B12 levels is NOT the same as a B12 defficiency. Some of the dose levels cited on this "thread" are horrendously high. Luckily B12 is water soluble so well over 90% of your B12 supplements are excreted in your urine and harms your wallet not your body. Statistically you are more likely to need to drink more water than to need mega doses of B12. Having said that IF you actually do need B12 supplements you should take it in a form that is free of impurities and readily bioavailable. There are some excellent articles on B12 on HEALTHLINE.COM among other sites but it might be that instead of focussing on B12 some of us would be better served by reducing our anxiety levels and increasing our overall wellbeing? This is more likely to be achieved by exercise, diet control, meditation and mindfulness than by any "magic bullet" be it a megadose of B12 or a so called "nerve tonic."

On a lighter note some 70 years ago in the East End of London, my Aunt who,suffered from "bad nerves" was told by her Doctor to drink brown ale (for nutritional purposes.) She did....and she lived to be 95 ....because of the ale or despite it!

Jump to this post

I've wondered about B12 blood tests. I had one earlier this year that was 1175. I was concerned (Dr Google had some horrible things to say about this) but neither my GP nor my Neurologist were concerned. I had been taking OTC supplements, and my Doctor said to stop taking them for awhile. Another test about 6 months later was around 400 - so back within normal limits. (This made me wonder about B12 being water soluble!) For what it's worth, my Neurologist said that SFN from B12 deficiency is rare.

REPLY
maryv449 | @maryv449 | Dec 30, 2019

Very interesting Sometimes you wonder what is good and what is harmful in supplements.

REPLY
lorirenee1 | @lorirenee1 | Dec 30, 2019
In reply to @rwinney "Takes one to know one. 😊" + (show)
@rwinney

Takes one to know one. 😊

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r@rwinney Awwwwwww……..Lori R.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Dec 30, 2019
In reply to @lorirenee1 "@rwinney Hi, Rachel, Did you find that raising your B12 to a better level helped your..." + (show)
@lorirenee1

@rwinney Hi, Rachel, Did you find that raising your B12 to a better level helped your pain in any way? I so wish my docs would have found my low B12 two years ago, when my neuropathy started! Thanks, Lori Renee

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No, not at all. It did however regulate my crazy rollercoaster body temps, heart palpitations, exhaustion, shortness of breath and dizzy spells.

REPLY
1 reply
Leonard | @jakedduck1 | Dec 30, 2019
In reply to @rwinney "Hey Leonard and Lori Renee For what it's worth...while going through all the motions to find..." + (show)
@rwinney

Hey Leonard and Lori Renee
For what it's worth...while going through all the motions to find the underlying cause of my SFN diagnosis, my B12 was found at 219 and methylmelonic acid levels off. My Neuro sent me asap for injections every 2 weeks and retested me every 3 months until B12 reached 535. At that point he was satisfied for me to take oral B12 daily. He will continue to monitor unless I feel the immediate effects of B12 slipping earlier.

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@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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1 reply
pfbacon | @pfbacon | Dec 30, 2019

Did any of you develop Neuropathy after having a particularly virulent virus or flu ? Peggy

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2 replies
marazion | @marazion | Dec 31, 2019

On the subject of very high doses of B12, the following article suggests possible benefits and possible side effects.

https://www.healthline.com/nutrition/too-much-vitamin-b12#benefits

On the subject of getting neuropathy as a consequence of a virulent virus infection, luckily I haven't but there are many reports of such occurrences after severe cases of chicken pox, shingles, West Nile disease, Mono and also HIV.

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