1. < Neuropathy

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

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

mcgatt | @mcgatt | Dec 27, 2019
In reply to @rlhl "I will look up the Foundation. I am very discouraged today because i tried to go..." + (show)
@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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Yes. The pain is too much. Beyond the threshold. One can only accomidate oneself to the situation and hope no one hears ones screams during the night.

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1 reply
pfbacon | @pfbacon | Dec 27, 2019

We should also consume at least 2 tablespoons of fat each day (any kind, the healthier ones are best of course). It replenishes the oily myelin sheathing around the nerves. I don't know if there is any way to measure the myelin sheathing. This advice came from my nutritionist. Peggy

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1 reply
goldleaf | @goldleaf | Dec 27, 2019
In reply to @mcgatt "Yes. The pain is too much. Beyond the threshold. One can only accomidate oneself to the..." + (show)
@mcgatt

Yes. The pain is too much. Beyond the threshold. One can only accomidate oneself to the situation and hope no one hears ones screams during the night.

Jump to this post

I usually don’t like to have a conversation about dealing with someone else’s pain but believe me I do understand your situation. I was diagnosed with Central Sensitization Syndrome a few years ago. Since a lot of people don’t really know about this diagnosis and that includes doctors, I will give you a general idea it. I use the term general because there are many reasons an varying degrees of how it affects people. To simplify it, it is an exaggeration that takes place in your central nervous system. In regards to pain, your brain starts thinking that your excruciating pain and your reaction to it is now a normal thing. So say if you bump your knee or stick yourself with a needle, the pain you feel is way beyond the actual happening. Doctors refer to it as a wind up. Once this happens and since I am living with this and all the reach I have done on this subject, it will never go away. There are no treatments that work or cures right now. This is a real medical problem not something in your head. Doctors are aware of this medical condition and it seems rare. I don’t think it is all that rare. Since I am not a doctor , I don’t expect or want you to take my word for it. Look it up yourself. People who suffer like you from long term chronic pain can have this happen to them. There is a genetic predisposition from what I have read that is part of why this can take place. Yes I have pain all the time and then I have excruciating pain quite often. Screaming and ending my life is what happens to. There is no pain scale I have been told by neurologist that can accurately measure this. I am being told that I have an even rarer form of Central Sensitization. This has affected all my senses. I have become chemically sensitive to. I can no longer use any pharmaceutical meds or even natural pain relievers. I can only eat certain foods. Sucking it up is not an option for me but a necessity. For me to advise you on how to deal with your pain would be ridiculous. What I would suggest is find a real doctor who will spend his time trying to help. I have found some relief with the neurologist I go to. I use injections of a steroid. That doesn’t help everyone but it helps me.

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Dec 27, 2019
In reply to @goldleaf "I usually don’t like to have a conversation about dealing with someone else’s pain but believe..." + (show)
@goldleaf

I usually don’t like to have a conversation about dealing with someone else’s pain but believe me I do understand your situation. I was diagnosed with Central Sensitization Syndrome a few years ago. Since a lot of people don’t really know about this diagnosis and that includes doctors, I will give you a general idea it. I use the term general because there are many reasons an varying degrees of how it affects people. To simplify it, it is an exaggeration that takes place in your central nervous system. In regards to pain, your brain starts thinking that your excruciating pain and your reaction to it is now a normal thing. So say if you bump your knee or stick yourself with a needle, the pain you feel is way beyond the actual happening. Doctors refer to it as a wind up. Once this happens and since I am living with this and all the reach I have done on this subject, it will never go away. There are no treatments that work or cures right now. This is a real medical problem not something in your head. Doctors are aware of this medical condition and it seems rare. I don’t think it is all that rare. Since I am not a doctor , I don’t expect or want you to take my word for it. Look it up yourself. People who suffer like you from long term chronic pain can have this happen to them. There is a genetic predisposition from what I have read that is part of why this can take place. Yes I have pain all the time and then I have excruciating pain quite often. Screaming and ending my life is what happens to. There is no pain scale I have been told by neurologist that can accurately measure this. I am being told that I have an even rarer form of Central Sensitization. This has affected all my senses. I have become chemically sensitive to. I can no longer use any pharmaceutical meds or even natural pain relievers. I can only eat certain foods. Sucking it up is not an option for me but a necessity. For me to advise you on how to deal with your pain would be ridiculous. What I would suggest is find a real doctor who will spend his time trying to help. I have found some relief with the neurologist I go to. I use injections of a steroid. That doesn’t help everyone but it helps me.

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I'm so sorry to hear this has happened to you.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Dec 27, 2019
In reply to @pfbacon "We should also consume at least 2 tablespoons of fat each day (any kind, the healthier..." + (show)
@pfbacon

We should also consume at least 2 tablespoons of fat each day (any kind, the healthier ones are best of course). It replenishes the oily myelin sheathing around the nerves. I don't know if there is any way to measure the myelin sheathing. This advice came from my nutritionist. Peggy

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Good advice Peggy.

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Dec 27, 2019
In reply to @johnbishop "@trishj46, I think the issue is your verizon.net email address. Verizon.net got out of the email..." + (show)
@johnbishop

@trishj46, I think the issue is your verizon.net email address. Verizon.net got out of the email business Dec 2017 and migrated all of their email services to Yahoo email. I'm pretty sure you are not receiving the Connect email notifications because they are being blocked by your spam filter.

I'm guessing that Verizon is your Internet service provider. If this is the case, I would stop by one of their stores and see if you can get a service rep to help you check your spam filters to see if your connect emails are being blocked.

You mentioned having a Chromebook so you should be able to make a shortcut on your desktop so that you can easily get to Connect. Here's how to do it.

1. Go to Connect: https://connect.mayoclinic.org/
2. Click the 3 vertical dots at the upper right corner of the Google Chrome web browser screen.
3. Select More tools...
4. Select Create shortcut
5. Type Connect in the box (currently will be showing the name of the discussion) or leave the default discussion name.
6. Check the Open as window box - this will make a shortcut on your main desktop screen that you can click on to go to the Connect website.

If you are still not able to figure it out, please use the following form to contact our director @colleenyoung
-- https://connect.mayoclinic.org/contact-a-community-moderator/

I'm also sending this as a private message so that hopefully you will receive one of them.

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@johnbishop A recent blood test put my B12 around 400, right in the center of the normal level. Is that ok?

Jim

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Dec 27, 2019
In reply to @jimhd "@johnbishop A recent blood test put my B12 around 400, right in the center of the..." + (show)
@jimhd

@johnbishop A recent blood test put my B12 around 400, right in the center of the normal level. Is that ok?

Jim

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Hi Jim @jimhd, I think the B12 level is only a problem when it's too low. I do take an Active B12 Lozenge with L-5 MTHF twice daily as part of my neuropathy supplements. You may have already seen this link but if not it may explain it better than I can.

Nutritional Neuropathies -- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

REPLY
lorirenee1 | @lorirenee1 | Dec 28, 2019
In reply to @jimhd "@johnbishop A recent blood test put my B12 around 400, right in the center of the..." + (show)
@jimhd

@johnbishop A recent blood test put my B12 around 400, right in the center of the normal level. Is that ok?

Jim

Jump to this post

@jimhd I think a level of 400 is fine. When I went to my neurologist a few weeks ago, she said my B12 is way too low, and repeated the blood test again. My B12 is at about 200. It was even lower the first time. She said that with someone with neuropathy, it should be at least at 400. Had my B12 problem been caught 2 years ago, when I did the first B12 blood work, I may have been really helped with B12 injections. I am taking them now, but who knows if they will help. Several of my doctors saw my low B12 and did nothing. In summary, the neurologist is aiming for my level to be at least at 400, so I think you are ok. Lori Renee

REPLY
1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Dec 28, 2019
In reply to @lorirenee1 "@jimhd I think a level of 400 is fine. When I went to my neurologist a..." + (show)
@lorirenee1

@jimhd I think a level of 400 is fine. When I went to my neurologist a few weeks ago, she said my B12 is way too low, and repeated the blood test again. My B12 is at about 200. It was even lower the first time. She said that with someone with neuropathy, it should be at least at 400. Had my B12 problem been caught 2 years ago, when I did the first B12 blood work, I may have been really helped with B12 injections. I am taking them now, but who knows if they will help. Several of my doctors saw my low B12 and did nothing. In summary, the neurologist is aiming for my level to be at least at 400, so I think you are ok. Lori Renee

Jump to this post

@lorirenee1

Thanks for the information. It sounds like I don't need to worry about it.

Jim

REPLY
1 reply
mcgatt | @mcgatt | Dec 28, 2019
In reply to @goldleaf "I usually don’t like to have a conversation about dealing with someone else’s pain but believe..." + (show)
@goldleaf

I usually don’t like to have a conversation about dealing with someone else’s pain but believe me I do understand your situation. I was diagnosed with Central Sensitization Syndrome a few years ago. Since a lot of people don’t really know about this diagnosis and that includes doctors, I will give you a general idea it. I use the term general because there are many reasons an varying degrees of how it affects people. To simplify it, it is an exaggeration that takes place in your central nervous system. In regards to pain, your brain starts thinking that your excruciating pain and your reaction to it is now a normal thing. So say if you bump your knee or stick yourself with a needle, the pain you feel is way beyond the actual happening. Doctors refer to it as a wind up. Once this happens and since I am living with this and all the reach I have done on this subject, it will never go away. There are no treatments that work or cures right now. This is a real medical problem not something in your head. Doctors are aware of this medical condition and it seems rare. I don’t think it is all that rare. Since I am not a doctor , I don’t expect or want you to take my word for it. Look it up yourself. People who suffer like you from long term chronic pain can have this happen to them. There is a genetic predisposition from what I have read that is part of why this can take place. Yes I have pain all the time and then I have excruciating pain quite often. Screaming and ending my life is what happens to. There is no pain scale I have been told by neurologist that can accurately measure this. I am being told that I have an even rarer form of Central Sensitization. This has affected all my senses. I have become chemically sensitive to. I can no longer use any pharmaceutical meds or even natural pain relievers. I can only eat certain foods. Sucking it up is not an option for me but a necessity. For me to advise you on how to deal with your pain would be ridiculous. What I would suggest is find a real doctor who will spend his time trying to help. I have found some relief with the neurologist I go to. I use injections of a steroid. That doesn’t help everyone but it helps me.

Jump to this post

Oh God! Think I'm headed that way. Just hope my screams at night don't awaken my neighbors. There must be a way to get to the place where there is no pain. Mind over matter?

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