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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Vitamin B 12 injections was a real game changer for me. My B 12 level was low normal. My neurologist prescribed vitamin B 12 supplements years ago, they didn't do much and I stopped taking them. My primary care doctor suggested I take B 12 injections, I take one every 1 to 3 weeks with some very good results. It's not a cure by any means, however, it's made life much easier. I had espisodes in the past where the pain was deep as if the bone was being broken and crushed, it could last for hours. It was almost impossible to walk. I rarely have that level pain since taking B 12 injections and never for such long periods of time.

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@mikeg0822

Hello,
Has anyone out there tested positive for Bartonella and linked it with burning pain in the feet? I’ve had neuropathy for 19 months. At month 12, it was discovered I had low B12 and have been doing supplements. Things have gotten better but I still have very bad days. I went to see a functional medicine doctor and had a positive Bartonella test which she says caused burning pains in the feet. I’m on my 6th month of herbal treatment with her, but my neurologist thinks it’s a waste of time and money. He preaches patience and recovery through B12 supplements. Has anyone had a similar story? Thanks!

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A neurologist told a friend I ran into that she had too much B6 in her system which was causing neurological issues. Some supplements just go through our system, our bodies use what we need and surplus goes through the bowels. Excess Vitamin B6 stays in the tissues for months or years. That’s why a good provider looks at our bloodwork and puts in our records all the supplements we take

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Check allergy to Gluten!

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@rwinney

@mikeg0822 -
Hey there, Mike. Yes, I have experience with B12 deficiency, most likely being the cause of small fiber neuropathy. Thank you @artscaping for thinking of me to help contribute.

I had begun to notice mild symptoms like racing heart and fatigue, then progressed to weakness, numbness, burning, vibrations, shocking pains, tingling and vibrations. A skin punch biopsy detected small fiber neuropathy and then it took several months after to get through a variety of testing to narrow down the underlying cause. Low B12 was the only factor that my neurologist came up with. I began weekly B12 injections for a while then every other week until blood testing showed I was within range. My doctor told me that nerves can regenerate themselves, but it may take 2-3 years.

Here's my advice...believe your doctor that you will recover. Think positive. Don't worry about woulda, coulda, shoulda, that's over. Eat a healthy diet and get proper nutrition through food. Have patience. Exercise and stay as active as possible. Find joy and distraction, and know...

You got this!

How are you doing currently? You mention making progress already which is awesome! How have you been managing symptoms?

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Hi, may I ask how you are doing now did the B12 help? I'm having all these symptoms and I'm very scared. This has progressed all over my body with tingling and weird sensations of numbness. I would love to hear back from you. Thank you so much.

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@mikeg0822

My number was 236 in July of 2021, but my PCP did not let me know that this was abnormal. In January of 2022, it was 112, which is when I started injections and supplements. Now, my B12 is over the normal range, which is good. I am hoping that this is enough to allow me to begin healing.

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How are you doing now? Any updates?

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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?

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@shordae

Hi, may I ask how you are doing now did the B12 help? I'm having all these symptoms and I'm very scared. This has progressed all over my body with tingling and weird sensations of numbness. I would love to hear back from you. Thank you so much.

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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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@shordae

Hi, may I ask how you are doing now did the B12 help? I'm having all these symptoms and I'm very scared. This has progressed all over my body with tingling and weird sensations of numbness. I would love to hear back from you. Thank you so much.

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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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Yes, I have a positive biopsy but they don't know what's going on. They're trying to move up my neurology appointment. I have a vibration buzzing, feeling all over my body.

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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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So your whole body is numb and you cannot feel it at all? And you had small fiber neuropathy? If you did have a confirmed biopsy, was it length dependent or non-length dependent?

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