Vitamin B12 deficiency and small fiber neuropathy

Posted by mikeg0822 @mikeg0822, Sep 23, 2022

Hi everybody,
I was hoping to possibly connect or receive advice. Has anybody been diagnosed with small fiber neuropathy caused by a vitamin B12 deficiency? I'm 28 years old and have always been healthy otherwise. I've never smoked, always maintained my fitness level, and have always had a relatively healthy diet. My B12 deficiency went unnoticed for 13 months, and I finally began getting treated for it about eight months ago. Doctors are hopeful I can recover but aren't sure. Does anybody have any experience with this? Any advice would be welcome. Thank you!

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@michellemu1992

I also had deficient in vitamin B 12 and have Neuropathy. I have numbness all over by body there is no feeling anywhere and is been 1 1/2 years ago and the numbness is still there. I took vitamin B12 under the tung how do you spell tongue, tongue, my tongue until it came up to normal. It didn’t work I was to far gone.
I’m sorry I hope it comes back for you.

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How long did you take the B12 for? Did you ever try injections?

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@rwinney

Hi @shordae, I'm sorry you're experiencing nerve issues . It's understandable that you're scared from feeling odd symptoms through your body. I remember feeling the very same way when I started having nerve sensations
- numbness, electric shocks, tingles, skin burning. Fear is a natural response to something that you've never felt before and it's normal to have concern if you feel you are in harm. It's the good old fight or flight mode.

I was diagnosed with small fiber neuropathy from a B12 deficiency so the first thing I did was begin B12 shots weekly and after a few months I was able to go to a oral supplement. Neuropathy can in some cases be slowed down or reversed by supplementing B12 but a neurologist would be the best to explain to you how long something like that would take or if it was reversible. I take nerve medication now and I'm doing better. Have you seen a neurologist yet?

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Hi Rachel
What nerve medication are you using please?

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Greetings. In my life I have had two episodes of low B12, associated with symptoms, parasthesiae in limbs. Both times they were treated with oral B12 with improvement of symptoms and normalization of B12 levels. One episode was associated with PPI use and nutritional issues; the second episode was not clearly attributed to any cause. Now in later life, I have peripheral neuropathy: with subtle sensory changes in arms and decreased position sense and balance issues in my legs. I take B12; levels are normal. I exercise. Did my two episodes contribute to later life mild neuropathy? Perhaps?

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@sharka

Hi Rachel
What nerve medication are you using please?

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Pregabalin (Lyrica)

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@shordae

How are you doing now? Any updates?

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Hi @shordae ,
I am definitely doing better since I made the original post. I went through close to three horrible years with constant pain in my feet. Since getting my B12 up and taking medication, things are better, but they still go in flares. I have a few weeks where I feel like a normal person again. Then, I may have periods of time with constant pain again. I worry about getting tolerant to the medication. However, I really learned through this that I have to take things day by day and try not to think of the future too much. I hope things will improve for you as well.

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I find foot massages help. Meds help a bit with pain but I don’t line all the meds. But they don’t help with weakness

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Hi Chris, how did you know that you had B12 deficiency? Tom.

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@runnergirl

@mikeg0822 and @moylandavis - yes, I neglected to mention the MTHFR gene. Thanks for bringing it up. I am homozygous for the a1298c mutation. Just started a different injectable form of b12 and am going to see if that is more helpful.
Have you had your copper level checked?

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How are you now? Did b12 reverse your neuropathy

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@madison2023

I have been experiencing neuropathy-like symptoms for almost 6 months, although my EMG and physical exams show no significant nerve damage. After numerous tests they determined my B-12 was 315 (low). It has increased to over 800 with supplements. My neurologist said it can take 6-12 months for symptoms to improve. I have been following the B-12 Society (based in the UK) on Facebook. They are insistent that if you have neurological symptoms you need B-12 injections to get the vitamin into your cells. They feel that with oral supplements Vitamin B-12 only sits in the bloodstream and doesn't truly heal the body. My neurologist disagrees and actually told me to go off B-12 since my numbers have dramatically increased (I still take B complex and a multi-vitamin). I am so confused and feel there are no clear answers when it comes to B-12 deficiency. Magnesium glycinate has been a godsend for me to get restful sleep at night. Best wishes to you for a full recovery.

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How are you now? Has your neuropathy improved? Did the B12 help you?

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@sallylynn

B12 and neuropathy & bloodwork
Hello. Looking for answers. Any advice would be appreciated. Events: July 26 2023 out of no where I began to get full body tingling, pin & needles, burning sensation with sporadic itch. My skin felt I was sunburned. Sleeping my back felt as if I was lying on sandpaper. Not real severe, but scary. July 27 my ankles were aching & my front of my calves. July 28 went to ER. At this time I was on antibiotic Cefpodoxime proxetil for UTI. Hospital ran labs. They said all looked good. No explanation why my skin was feeling this. It's now been over a month. Symptoms progressed. Went back to ER onn August 24, there ran many labs. The said I have PN and prescribed Gabapentin. I reviewed my labs on My Chart with a fine tooth comb. These are my concerns: My MCHC is above normal range at 37. The normal range is 32-36. My trends are as follows starting from August 24 to June 3: 37, 36, 37, 36, 36. I researched high MCHC (UWH) and it says: High MCH scores are commonly a sign of macrocytic anemia. This condition occurs when the blood cells are too big, which can be a result of not having enough vitamin B12 or folic acid in the body. Although they did a B12 test is was "Borderline", mine was 268. The normal range is 213-816. I am 55 digits to be considered B12 deficient. I have only 2 trends, August 24 at 268 and Sept. 13 2021 at 330. With the information I provided,could I be experiencing neuropathy symptoms from B12 deficiency.

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How are you doing now? I have the exact same sensations in my skin. That's how mine started, but it has progressed. Did you start taking B12? Has it helped? I would love to talk further. Your numbers are definitely low.

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