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

@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!

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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.

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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

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@lorirenee1

@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

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Ive taken B12 injections (once a month) for about 3 years now. My count goes up but to tell the truth, i dont feel any different, energy wise.

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@johnbishop

@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

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I did not receive any notifification for this post. I found it by accident. Thanks John but I don't think I am getting it I am on chrome laptop. I wrote everything down and will try again. Why did I not receive notification for this post and others I wrote to for help?? I am stillmconfused. I have tried every night and don't know if I should just drop out. I would have nerver got your directions if not by accident. Feelmsomething is wrong. Thanks very much John. trishj46

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@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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in reply to JohnBishop——I just posted a reply to you on answering my questions—I never got a post from you about that—found it by accident. After I read andv wroite down your directions
I sent reply and it just dissappeared–! I do not get it so maybe I should just drop out out.
I will tryb all the directions but don't bthink I follow! Thanks very much. Hope you get post. I am on chrome laptop. trishj46

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@trishj46

I did not receive any notifification for this post. I found it by accident. Thanks John but I don't think I am getting it I am on chrome laptop. I wrote everything down and will try again. Why did I not receive notification for this post and others I wrote to for help?? I am stillmconfused. I have tried every night and don't know if I should just drop out. I would have nerver got your directions if not by accident. Feelmsomething is wrong. Thanks very much John. trishj46

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Maybe the replies to your post went to spam. That's what has happened to me with xfinity. I had to remove my spam filter which is a hassle but I'm getting the posts now.

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@trishj46

in reply to JohnBishop——I just posted a reply to you on answering my questions—I never got a post from you about that—found it by accident. After I read andv wroite down your directions
I sent reply and it just dissappeared–! I do not get it so maybe I should just drop out out.
I will tryb all the directions but don't bthink I follow! Thanks very much. Hope you get post. I am on chrome laptop. trishj46

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Hi @trishj46,

Here are a few basic step-by-step directions you can try; I’m sure @johnbishop or @colleenyoung will post more details soon:
1. In your internet browser, type connect.mayoclinic.org
2. On the Connect homepage, click on GROUPS ( https://connect.mayoclinic.org/groups/ )
3. Scroll through the groups, click on Neuropathy ( https://connect.mayoclinic.org/group/neuropathy/ )
4. Scroll through the discussions and click on any of the titles to read that particular discussion. For instance clicking on discussion titled, VITAMIN B12 and Neuropathy
will take you to https://connect.mayoclinic.org/discussion/vitamin-b12-and-neuropathy/

Within a discussion thread, you can decide to read messages/posts from oldest to newest (chronological order) or newest to oldest (reverse chronological order).

Since you also mentioned you didn’t get notification of John’s posts, here are some additional instructions:

Control when and how often Mayo Clinic Connect sends email notifications to you. You can change your notification preferences any time. https://connect.mayoclinic.org/get-started-on-connect/
1. Go to your Account Settings.
2. Click your avatar in the top right and select Account Settings.
3. Scroll down to Email Notifications.
4. Click +Edit beside each category and choose to receive email notifications for each post, in your digest only or to unfollow.
– Posts: You can turn on or turn off to receive a notification when someone likes a post you’ve made or when a member @mentions you in a post. (Recommended to keep on.)
– Groups: Follow Groups that interest you. Choose how you wish to be notified about activity in each of the groups you follow.
– Pages: Follow expert Pages (blogs by Mayo Clinic experts) that interest you. You’ll be notified when a new blog post is published (usually weekly or bi-weekly).
– Digest: Choose to receive an email summary of activity from the Groups and Pages that you follow: Daily, Weekly or Never.

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@trishj46

in reply to JohnBishop——I just posted a reply to you on answering my questions—I never got a post from you about that—found it by accident. After I read andv wroite down your directions
I sent reply and it just dissappeared–! I do not get it so maybe I should just drop out out.
I will tryb all the directions but don't bthink I follow! Thanks very much. Hope you get post. I am on chrome laptop. trishj46

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@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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