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

@lorirenee1 the Foundation for Peripheral Neuropathy has some information on vitamin deficiency and neuropathy on their website. I'm by no means an expert but think that vitamin B12 deficiency is just a piece of the puzzle for nerve damage. I take a 1000 mcg Vitamin B12 Supplement with Methylfolate daily along with my other supplements. I'm hoping the B12 shots help give you some relief from the pain.
https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/vitamin-nutrition-deficiency/

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I have just started (3 months) taking vitamin B12 pills but I do not know what positive changes I should be looking and hoping for? do you?

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@johnbishop

@lorirenee1 the Foundation for Peripheral Neuropathy has some information on vitamin deficiency and neuropathy on their website. I'm by no means an expert but think that vitamin B12 deficiency is just a piece of the puzzle for nerve damage. I take a 1000 mcg Vitamin B12 Supplement with Methylfolate daily along with my other supplements. I'm hoping the B12 shots help give you some relief from the pain.
https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/vitamin-nutrition-deficiency/

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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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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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@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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Hi @rlhl, I see you joined today and would like to welcome you to Connect. You mentioned you started taking vitamin B12 3 months ago and are wondering what postive changes you should be looking for. Did you have a blood tests indicating your B12 levels were low?

I think I would be discouraged also if I was not able to stand in line and had to leave everything and go home. I hate standing in lines myself. Hopefully you can find a treatment that will provide some relief for the pain.

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@johnbishop

@lorirenee1 the Foundation for Peripheral Neuropathy has some information on vitamin deficiency and neuropathy on their website. I'm by no means an expert but think that vitamin B12 deficiency is just a piece of the puzzle for nerve damage. I take a 1000 mcg Vitamin B12 Supplement with Methylfolate daily along with my other supplements. I'm hoping the B12 shots help give you some relief from the pain.
https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/vitamin-nutrition-deficiency/

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@johnbishop As always, thanks so much, John. You are so darn helpful! Lori Renee

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@rlhl

I have just started (3 months) taking vitamin B12 pills but I do not know what positive changes I should be looking and hoping for? do you?

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I would imagine some of the terribly painful neuropathy symptoms would go away!!!! Lori Renee

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@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, Needless to say, I am very upset that doctors missed my low level, staring at them in the face. I am so sorry that your SFN started this way. I have large fiber, and most likely small fiber, even though the biopsies did not show it. My neuro nurse said the biopsies are not completely accurate, and all my symptoms are of small fiber. I know how sick you are, and so diligent with yourself. Wish that the doctors were half as diligent. Anyway, I will start my shots as soon as I make appointments with a lab by my house. Have no idea at this point if B12 will even help. Thanks from the heart, for responding. Rachel, this life of ours is not easy. God bless, and I will post when I know more. Lori Renee

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@rlhl

I have just started (3 months) taking vitamin B12 pills but I do not know what positive changes I should be looking and hoping for? do you?

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Hard to know the positive changes unless you understand the negative changes, if any. Besides listening to your body the other is through blood work and measuring your b12/methylmelonic acid levels. My deficiency led me to a small fiber poly neuropathy diagnosis. Symptoms were nerve damage and all that it encompasses, irregular body temps and exhaustion to name the most obvious. Good luck in figuring things out.

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@lorirenee1

@rwinney Hi Rachel, Needless to say, I am very upset that doctors missed my low level, staring at them in the face. I am so sorry that your SFN started this way. I have large fiber, and most likely small fiber, even though the biopsies did not show it. My neuro nurse said the biopsies are not completely accurate, and all my symptoms are of small fiber. I know how sick you are, and so diligent with yourself. Wish that the doctors were half as diligent. Anyway, I will start my shots as soon as I make appointments with a lab by my house. Have no idea at this point if B12 will even help. Thanks from the heart, for responding. Rachel, this life of ours is not easy. God bless, and I will post when I know more. Lori Renee

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You're in my thoughts and I sincerely hope it does not create you more problems.

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@johnbishop

@lorirenee1 the Foundation for Peripheral Neuropathy has some information on vitamin deficiency and neuropathy on their website. I'm by no means an expert but think that vitamin B12 deficiency is just a piece of the puzzle for nerve damage. I take a 1000 mcg Vitamin B12 Supplement with Methylfolate daily along with my other supplements. I'm hoping the B12 shots help give you some relief from the pain.
https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/vitamin-nutrition-deficiency/

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Hi John,

I thought the protocol recommended 3000 mcg 2Xs daily?

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@jager5210

Hi John,

I thought the protocol recommended 3000 mcg 2Xs daily?

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Hi @jager5210, the protocol has two B12 supplements listed. B12 Lozenges along with folate provide for greater uptake of B12 into the body. The preferred one is Seeking Health | Active B12 Lozenge with L-5 MTHF | Vitamin B12 Supplement | Methylfolate | 60 Lozenges — 1 tablet twice daily. The optional one if the above on is unavailable is Doctors Best B12 1500 mcg Capsule (2 – 1500 mcg capsules twice daily). http://solutions2pnpd.com/ has the links and instructions.

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Hopefully adding B12 helps you Lori! When initial neuropathy symptoms presented I was told my level was low and added the METHYLCOBALAMIN form of B12. Don’t use the other one, cyanide LOL something similar. Well my level went too high so I reduced it to 1000mcg. a day and now my level is fine however it wasn’t a cure for neuropathy. I do continue taking it because supposedly as we age (yeah something else)it is important to supplement B12 since it is common to have less than an optimal level.

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@wisfloj

Hopefully adding B12 helps you Lori! When initial neuropathy symptoms presented I was told my level was low and added the METHYLCOBALAMIN form of B12. Don’t use the other one, cyanide LOL something similar. Well my level went too high so I reduced it to 1000mcg. a day and now my level is fine however it wasn’t a cure for neuropathy. I do continue taking it because supposedly as we age (yeah something else)it is important to supplement B12 since it is common to have less than an optimal level.

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@wisfloj Hi Joanne, Hope you are ok????? Kind of OK???? So hard, all of this. Thanks for the info on the right B12 to take. I have a feeling the nurse found my B12 problem too late, but I will do the injections of the stuff. Who knows. I am trying to escape a neuro stimulator. Yeesh. And aging on top of all of it. Write when you can….. Lori R.

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@rwinney

You're in my thoughts and I sincerely hope it does not create you more problems.

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@rwinney Hi again, Rachel. Again, a big thanks to you. More problems from b12? Holy cow. Not gonna think about it. Are we made of tough stuff? Sometimes. Then we cry. …….Lori Renee

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