Vitamin B12 and Neuropathy
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
Interested in more discussions like this? Go to the Neuropathy Support Group.
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
@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
Takes one to know one. 😊
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.
Very interesting Sometimes you wonder what is good and what is harmful in supplements.
r@rwinney Awwwwwww……..Lori R.
No, not at all. It did however regulate my crazy rollercoaster body temps, heart palpitations, exhaustion, shortness of breath and dizzy spells.
@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
Did any of you develop Neuropathy after having a particularly virulent virus or flu ? Peggy
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.