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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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Profile picture for joannehart
joannehart | @joannehart | Mar 6 5:26pm
In reply to @g8torgirl71 "Long-term, undiagnosed, vitamin B12 deficiency can CAUSE neuropathy (and, at the very least, contribute to it)!!!..." + (show)
Profile picture for g8torgirl71 @g8torgirl71

Long-term, undiagnosed, vitamin B12 deficiency can CAUSE neuropathy (and, at the very least, contribute to it)!!! This is especially true if you have elevated folate, which is masking the vitamin B12 deficiency. WHEN THIS HAPPENS, IT IS CALLED "FUNCTIONAL" B12 DEFICIENCY. Your B12 numbers can actually be within range or low-normal, but your body cannot use the B12 the way it was intended. This is what happened to me and it went undiagnosed 7 years. I now have irreparable nerve damage. You should feel markedly better after several weeks with the B12. I had no idea how debilitating the complications from B12 deficiency could be. You should look at some of the youtube videos on "Long-term complications from b12 deficiency", and see if those line up with what you're experiencing. If you are like me, and think you may have "functional" b12 deficiency, ask your physician for an MMA (methylmalonic acid) blood test. This will prove whether you have a functional b12 deficiency. Best of luck

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@g8torgirl71 my B12 numbers are normal. I have had pn for 7 years. Red light therapy daily stopped the foot pain and the numbness has not increased. My balance was getting bad so my naturopath doctor put me on Vit B 12 liquid drops 5000 mcg sublingual as he said the pills do not work. He also put me on Alpha Lipoic Acid. My balance has improved!

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blowerk1216 | @blowerk1216 | Mar 7 11:17am
In reply to @roxiesmom13 "@tmlpsm1942 B12 is a funny thing. You can have adequate b12 in your blood but for..." + (show)
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@tmlpsm1942 B12 is a funny thing. You can have adequate b12 in your blood but for various reasons it’s not at the cellular level. My husband had pn from feet to chest and was finally diagnosed with subacute degeneration of the spine/transverse myelitis. He was given b12 injections daily to try and slow down progressive paralysis which lead to his death. Not to be a downer but if you have pn not caused by diabetes stay on top of it. It is taken too lightly by many doctors. God bless

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@roxiesmom13 from these postings there has been no mention of the type of B12 used. For functional purposes the body needs methylated B12. Has nobody been informed about this?

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joannehart | @joannehart | Mar 7 1:31pm

Yes, this is correct. Apparently the tablets do not work. I take Vit B12 5000mcg drops sublingual daily

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rollingf | @rollingf | Mar 7 11:35pm
In reply to @roxiesmom13 "@tmlpsm1942 B12 is a funny thing. You can have adequate b12 in your blood but for..." + (show)
Profile picture for roxiesmom13 @roxiesmom13

@tmlpsm1942 B12 is a funny thing. You can have adequate b12 in your blood but for various reasons it’s not at the cellular level. My husband had pn from feet to chest and was finally diagnosed with subacute degeneration of the spine/transverse myelitis. He was given b12 injections daily to try and slow down progressive paralysis which lead to his death. Not to be a downer but if you have pn not caused by diabetes stay on top of it. It is taken too lightly by many doctors. God bless

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@roxiesmom13 thank you!

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arcuri24 | @arcuri24 | Mar 8 10:56am
In reply to @blowerk1216 "@roxiesmom13 from these postings there has been no mention of the type of B12 used. For..." + (show)
Profile picture for blowerk1216 @blowerk1216

@roxiesmom13 from these postings there has been no mention of the type of B12 used. For functional purposes the body needs methylated B12. Has nobody been informed about this?

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@blowerk1216

I was not informed on this until this past week. I had been taking the other kind of B12 which is absorbed less efficiently into the body. I now switched to methylated B12--an important move for me as I have celiac disease and neuropathy. Also, I have pain from a shin shave biopsy which is going ever so slow in healing. Doctors do not give much advice about vitamins and I am not surprised.

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carolynpatten | @carolynpatten | Mar 9 11:20am

I’ve been following the thread on B12 and recently switched to the methylated form - so thank you, everyone!

There have been comments that taking it sublingually is more effective than orally, so today I googled “vitamin B12 sublingual vs oral” and came up with a report from the NIH that reviewed several databases for results from comparative studies. The overall results showed no statistical difference in hemoglobin levels when B12 was administered via IV, oral or sublingual. I couldn’t find studies showing comparison between different forms of B12. We all know that there seems to be a dearth of studies on virtually every subject related to PN, so there is that to consider. I would just take the advice that “pills don’t work” with a big side-eye!

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jchet | @jchet | Mar 9 1:52pm
In reply to @blowerk1216 "@roxiesmom13 from these postings there has been no mention of the type of B12 used. For..." + (show)
Profile picture for blowerk1216 @blowerk1216

@roxiesmom13 from these postings there has been no mention of the type of B12 used. For functional purposes the body needs methylated B12. Has nobody been informed about this?

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Yes, B-12 metholcobalamin, is the type you should take as it dissolves under the tongue. Natures Bounty, which I get at Walgreens, is the one I take. 🙂

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jchet | @jchet | Mar 9 1:54pm

Oooops, correct spelling Methylcobalamin!

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judygc | @judygc | Mar 18 11:02am
In reply to @rwinney "Hi Lori Renee I'm sorry to hear of your b12 blood work and confused as to..." + (show)
Profile picture for Rachel, Volunteer Mentor @rwinney

Hi Lori Renee
I'm sorry to hear of your b12 blood work and confused as to why it was allowed to get so low. Have you been diagnosed with Small Fiber Neuropathy already? Can't remember what type of neuropathy you have.
B12 deficiency caused my SFN. Never before did I know the importance of b12 and it's life altering, permanent effects. So sad that Drs don't make this is monitored priority especially for neuropathy patients.
My # was 212 when I testeed while looling for an underlying cause. Did weekly injections then every 2 weeks for 6 months until my b12/methylmelonic levels were average. Now to maintain, I take 3,000 mcg oral b12 daily.
Good luck on this next bit. You will level out but the question is whether more nerve damage has been done. My fingers are crossed for the answer to be no because it was caught early.
Rachel

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@rwinney Hi Rachel. Why do you question whether more nerve damage has been done from the shots?

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bridgetf | @bridgetf | Mar 18 11:29am
In reply to @rlhl "I will look up the Foundation. I am very discouraged today because i tried to go..." + (show)
Profile picture for rlhl @rlhl

I will look up the Foundation. I am very discouraged today because i tried to go Christmas shopping. I found items I wanted to buy and had them in my carriage but it was impossibly painful to stand in line so I had to leave them in the carriage and go home with nothing.

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@rlhl I have found a lot of relief from the Wim Hof breathing and cold plunging. Sometimes if I can’t plunge I’ll put an ice pack in my shoe 🥴I know that doesn’t help when you’re in the store . Dr Berg nerve support worth trying too. I understand your pain it’s really the worst pain I’ve ever had, hard to describe. Good luck, God bless you!

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