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

@johnbishop

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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John—can you help me??? Once I leave site I do not know how to get back on. I wrote to some others but no reply. Where do I go to click on to get on site? trishj46 I just found this by looking over an hour! Ready to give up!! trishj46 thanks!

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@trishj46

John—can you help me??? Once I leave site I do not know how to get back on. I wrote to some others but no reply. Where do I go to click on to get on site? trishj46 I just found this by looking over an hour! Ready to give up!! trishj46 thanks!

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@trishj46 I'm not sure what you are missing but maybe this will help.

First, Connect has a webpage address like any other website. The link for Connect is https://connect.mayoclinic.org/. I would recommend that you click on the Connect link and make a bookmark or favorite in your web browser program. That way anytime you want to go to Connect just click the favorite or bookmark. One question for you – are you using a computer or a cellphone to access Connect? It's much more difficult from a cellphone or mobile device for some people.

Second, once you are on the Connect site and you are logged in you should see your member profile at the top right of the screen next to the Appointment button. If you point to it with the mouse and then chose My Profile, it will take you to your profile page here:
https://connect.mayoclinic.org/member/197222aa006be5fea462176e700dc0329b6c3069d0/ – you might want to bookmark this link also so that you can easily get to it. If you scroll down on your profile page you will see all of your posts and can click on each one to go back to one of your previous discussion posts. Then you can go to the bottom of the page and type a new post or click Reply under any post that you want to reply to.

Third, at the bottom of every page is a Get Started on Connect link in the left footer column. If you click the link it will take you to this page – https://connect.mayoclinic.org/get-started-on-connect/. The Get Started on Connect guide gives you the how to instructions for the different tasks associated with Connect to try and make it easier for you.

Please click the View & Reply buttom at the bottom of the email notification you receive for this post and let me know if you still have questions. Also, if you don't mind, can you tell me what type of device you are using to view and respond to Connect emails.

Hoping this helps clear it up a little for you,
John

Liked by Lisa Lucier

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I just learned about low B12 from Peoples Pharmacy being one of the causes for nephropathy. I sure hope that you will keep us updated on your progress. I have burning feet and tender fingertips. They hurt all of the time.

Liked by Retired Teacher

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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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I am so sorry for you and I can relate to your pain. I end up buying on Amazon and other places who deliver for free.

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@maryv449

I just learned about low B12 from Peoples Pharmacy being one of the causes for nephropathy. I sure hope that you will keep us updated on your progress. I have burning feet and tender fingertips. They hurt all of the time.

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@maryv449 Are you saying that B-12 causes neuropathy? I have neuropathy in my feet and take B-12. I don't see any difference with or without. Is there an article that says B-12 is a cause?
Carol

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Go to http://www.peoplespharmacy.com and you will see an article on this subject. I don't know if it works but it is easy enough to try, they do offer other things and discourage the usual prescription pills. I have found relief with Neurapathy cream from Amazon and it is called that by name. It is worth a try for about $20. It has helped me.

Liked by Retired Teacher

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@maryv449

Go to http://www.peoplespharmacy.com and you will see an article on this subject. I don't know if it works but it is easy enough to try, they do offer other things and discourage the usual prescription pills. I have found relief with Neurapathy cream from Amazon and it is called that by name. It is worth a try for about $20. It has helped me.

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Hi @maryv449,

You may be right about the link between low vitamin B12 levels and neuropathy. Like most vitamins, B12 can’t be made by the body. Our bodies need vitamin B12 to make red blood cells, DNA, and carry out other functions. So, we have to get it from food or supplements.

Here are 2 recent journal articles that might interest you:
https://www.medicalnewstoday.com/articles/324265.php
https://emedicine.medscape.com/article/1152670-overview#showall

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@retiredteacher

@maryv449 Are you saying that B-12 causes neuropathy? I have neuropathy in my feet and take B-12. I don't see any difference with or without. Is there an article that says B-12 is a cause?
Carol

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@retiredteacher Hi Carol, it's Lori. Yes, low B12 can definitely cause Peripheral Neuropathy. When I was first diagnosed 2 years ago, my B12 was very low, but still within a normal range, so at least 5 doctors of mine did not catch it. Finally, last week, my neuro nurse actually checked the numbers, not just that I was in a low normal range. She said that with neuropathy, my b12 should be at least at a 400, but mine is at about 200. Monday, I start a week of B12 shots, followed by a tapering of shots. Sadly, I doubt they will help, because the damage is done. Had this been caught 2 years ago, maybe. I doubt now. Check your B12 numbers. Like I said, the number should be at least 400 with a person who has neuropathy. Good luck….Lori

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@lorirenee1

@retiredteacher Hi Carol, it's Lori. Yes, low B12 can definitely cause Peripheral Neuropathy. When I was first diagnosed 2 years ago, my B12 was very low, but still within a normal range, so at least 5 doctors of mine did not catch it. Finally, last week, my neuro nurse actually checked the numbers, not just that I was in a low normal range. She said that with neuropathy, my b12 should be at least at a 400, but mine is at about 200. Monday, I start a week of B12 shots, followed by a tapering of shots. Sadly, I doubt they will help, because the damage is done. Had this been caught 2 years ago, maybe. I doubt now. Check your B12 numbers. Like I said, the number should be at least 400 with a person who has neuropathy. Good luck….Lori

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@lorirenee1 Thanks so much. I am taking liquid daily and read the articles that said low B-12 can cause neuropathy. I have an appointment with my endo in two weeks, and since I am a diabetic 2, I am going to ask him about it and see what he says. The last time when the pain was mild, he wanted to put me on a medication, but I avoid prescriptions because of the side effects. I will have him check my numbers and see what happens.
I eat very little meat; I'm almost a vegetarian, so I'm probably not getting the red meat and other protein that gives the body B-12.
Thanks for the post.
Carol

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@retiredteacher

@maryv449 Are you saying that B-12 causes neuropathy? I have neuropathy in my feet and take B-12. I don't see any difference with or without. Is there an article that says B-12 is a cause?
Carol

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I thought that I had neuropathy in my feet for the last 10 years, but then my primary doctor mentioned to me that I might not have enough blood flow to my legs and feet ! I had an ultrasound done on my legs a I don't have enough blood flow to my legs and feet ! I go next Monday to have an angiogram done on my legs to see if there are any blockages in my legs !

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@seniordon09

I thought that I had neuropathy in my feet for the last 10 years, but then my primary doctor mentioned to me that I might not have enough blood flow to my legs and feet ! I had an ultrasound done on my legs a I don't have enough blood flow to my legs and feet ! I go next Monday to have an angiogram done on my legs to see if there are any blockages in my legs !

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@retiredteacher, I am also a retired teacher! Just curious, what were your symptoms? Same as most of us? Tingling, numbness, burning, stabbing needles etc.? Hmmmm perhaps a cause for my supposed 'idiopathic' neuropathy. I can’t buy that….fine one day and within a month wanting morphine for the awful burning!

Liked by Retired Teacher

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Re: B12 supplementation. My Dr. said get the sublingual kind, it didn’t cure my neuropathy but my blood levels are now in an acceptable range. Solgar sublingual methylcobalamin 1000 mcg. Is what I get from Amazon. One per day

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@wisfloj

@retiredteacher, I am also a retired teacher! Just curious, what were your symptoms? Same as most of us? Tingling, numbness, burning, stabbing needles etc.? Hmmmm perhaps a cause for my supposed 'idiopathic' neuropathy. I can’t buy that….fine one day and within a month wanting morphine for the awful burning!

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Unfortunately B12 deficiency can cause irreversible damage when not caught and corrected early enough. It's a very dangerous deficiency which I was never informed or educated about until it was too late. Now, I live in an altered state of nerve damage which has recreated my life. Wish I had known before but now that I do, I tell everyone I can to spread the word and have your level checked!

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I am so sorry that you are going through this, I am in the same boat. The burning feet is the worst pain but sore finger tips are no picnic either. The vitamin B12 is helping somewhat but, i may have started too late too.

Liked by Retired Teacher

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@retiredteacher

@lorirenee1 Thanks so much. I am taking liquid daily and read the articles that said low B-12 can cause neuropathy. I have an appointment with my endo in two weeks, and since I am a diabetic 2, I am going to ask him about it and see what he says. The last time when the pain was mild, he wanted to put me on a medication, but I avoid prescriptions because of the side effects. I will have him check my numbers and see what happens.
I eat very little meat; I'm almost a vegetarian, so I'm probably not getting the red meat and other protein that gives the body B-12.
Thanks for the post.
Carol

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@retired teacher Carol, Best of luck at the doctor. If you are almost vegetarian, it definitely could explain low B12. But I think that once the damage is done, it is done. I am starting B12 injections next week, but I doubt they will help. I would be amazed if they do. Lori Renee

Liked by Retired Teacher

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