Vitamin B12 deficiency and small fiber neuropathy

Posted by mikeg0822 @mikeg0822, Sep 23 4:16pm

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!

Interested in more discussions like this? Go to the Neuropathy group.

TAKE SUPPLIMENTS! no problem to get B12 levels up.

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Hi, @mikeg0822 – I've had autonomic neuropathy symptoms since early 2007, officially diagnosed in 2016 (yes, it took that long). I was also diagnosed with low vitamin B around the same time in 2016 (yes, the docs missed this one too). I've also had low copper, diagnosed in 2013, which can cause neuropathy. I have so many GI issues that I don't absorb enough vitamin B, so I've been on injections for a few years. The levels are still low. I'm currently being treated and monitored – still on injections and oral supplementation, but not certain if they're being absorbed and cells are utilizing them – this is the big question. I have a good diet and am athletic. (Was a competitive runner up until this wretched disease took over.) I'm hoping that once my levels of both B and copper are back to normal and sustained that my symptoms resolve. This would be a dream come true. But, it might have been too long to be able to turn everything around. With you being young and catching this soon, you might have better results.

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Have you been tested for the MTHFR gene mutation? If you have this mutation, you may have difficulty absorbing B12. There are active forms of B12 that improve absorption.
If you haven’t been tested, ask your doctor.

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@moylandavis

Have you been tested for the MTHFR gene mutation? If you have this mutation, you may have difficulty absorbing B12. There are active forms of B12 that improve absorption.
If you haven’t been tested, ask your doctor.

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Yes, I have, and I do have a partial mutation, so I take methylated B12 for supplements. My numbers are up and I’d say about 40% of my days are good after 8 months of supplementation. But a good portion of my days are still very painful and I’m wondering if I will recovery any more.

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@mikeg0822

Yes, I have, and I do have a partial mutation, so I take methylated B12 for supplements. My numbers are up and I’d say about 40% of my days are good after 8 months of supplementation. But a good portion of my days are still very painful and I’m wondering if I will recovery any more.

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@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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@tampabay

TAKE SUPPLIMENTS! no problem to get B12 levels up.

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B12 I finally was prescribed B12 injections after having lost too much blood.
Definitely need Vit D it helps B12. They work together. Have blood work up to make certain B12 & D are working for you. Be well. ✌🏼

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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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@runnergirl no I don’t believe so but I can ask about them. Have you gotten different B12 injections? I have received methylcobalamin and cyanacobalamin. Not sure if hydroxycobalamin is worth a shot?

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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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Good question, @mikeg0822 – you'd need to ask your doctor. Up until last week I've been on cyanocobalamin. Just started methylcobalamin injections. Let us know if you try the other.

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@mikeg0822, Good evening and welcome to Connect. Although I have SFN, small fiber neuropathy, I have not been diagnosed with any vitamin B12 deficiency. However, a fellow mentor on Connect does have experience with B12. In fact, I think something was missed and she suffered longer. Her name is Rachel @rwinney and she is a mentor for the Chronic Pain group. Perhaps she might have a few moments to respond to your inquiry and share her experience.

It does sound like there are others with the same need for that vitamin.
May you be free of suffering and the causes of suffering.
Chris

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