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.

jager5210 | @jager5210 | Dec 9, 2019

In reply to @johnbishop "@lorirenee1 the Foundation for Peripheral Neuropathy has some information on vitamin deficiency and neuropathy on their..." + (show)

Hi John,

I thought the protocol recommended 3000 mcg 2Xs daily?

John, Volunteer Mentor | @johnbishop | Dec 10, 2019

In reply to @jager5210 "Hi John, I thought the protocol recommended 3000 mcg 2Xs daily?" + (show)

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.

wisfloj | @wisfloj | Dec 10, 2019

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.

lorirenee1 | @lorirenee1 | Dec 10, 2019

In reply to @wisfloj "Hopefully adding B12 helps you Lori! When initial neuropathy symptoms presented I was told my level..." + (show)

@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.

lorirenee1 | @lorirenee1 | Dec 10, 2019

In reply to @rwinney "You're in my thoughts and I sincerely hope it does not create you more problems." + (show)

@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

trishj46 | @trishj46 | Dec 13, 2019

In reply to @johnbishop "Hi @rlhl, I see you joined today and would like to welcome you to Connect. You..." + (show)

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!

John, Volunteer Mentor | @johnbishop | Dec 13, 2019

In reply to @trishj46 "John---can you help me??? Once I leave site I do not know how to get back..." + (show)

@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

maryv449 | @maryv449 | Dec 14, 2019

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.

maryv449 | @maryv449 | Dec 14, 2019

In reply to @rlhl "I will look up the Foundation. I am very discouraged today because i tried to go..." + (show)

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.

Retired Teacher | @retiredteacher | Dec 14, 2019

In reply to @maryv449 "I just learned about low B12 from Peoples Pharmacy being one of the causes for nephropathy...." + (show)

@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