Sorry no experience, but glad it was diagnosed and that you're improving!

I have low B12, not outside the range, but low enough for my doctor to prescribe either injection or sublingual. I've had trouble taking the sublingual, started with pills - my error. Have not tried injection. But to answer your question, I have not experienced neuropathy, or at least I don't think I have. So I'm not helping either. Did you start with injection B12? I'm so glad it's helping you.

Many people I know have had very good success with the injections.

Arapahoe, daily capsules which are working well.

Terriks, I'm so glad it hasn't been debilitating for you!! Mine was progressing to the point that it would have been. Nerve conduction study results put me in the "severe" category. Wishing you all the best and many more long walks!

I was reordering B1 (thiamine) the other day and read that some people take it to relieve neuropathy. A medical textbook entitled Thiamine Deficiency Disease, Dysautonomia, and High-Calorie Malnutrition got me started taking high-dose B1 plus extra magnesium to improve my energy, and the results have been amazing.

I'm glad you're doing well with B12 capsules. Usually injections or sublingual lozenges are recommended for better absorption. Also, as you probably know there are several kinds of B12. Cyanocobalamin is the most common, but the methyl and hydroxy forms are more highly regarded.

Alisande, thank you! I'm not sure why the injections were not recommended for me though I did read that they are usually suggested when a B12 level is below a certain number, slightly lower than where I fell. I'll ask at my appt. next week and inquire also about which other B's I should consider. I wasn't aware of the different types of B12 so will delve into that. I really appreciate your insight!

Wow, my post disappeared!

I'll try again. I was diagnosed when I was 20 with severe B12 anemia. I had to go for injections each week until the levels went to normal. I was told that B12 by pill is destroyed by stomach acid and is useless.

Today, I take B12 sublingual. I haven't had it tested since I was young.

https://www.ncbi.nlm.nih.gov/books/NBK441923/

"Treatment of vitamin B12 deficiency involves repletion with B12. However, depending on the etiology of the deficiency, the duration and route of treatment vary. In patients who are deficient due to a strict vegan diet, an oral supplement of B12 is adequate for repletion.

In patients with a deficiency in intrinsic factor, either due to pernicious anemia or gastric bypass surgery, a parenteral dose of B12 is recommended, as oral B12 will not be fully absorbed due to the lack of intrinsic factor."

I started having peripheral neuropathy in my toes two summers ago. It was after my chemotherapy but I had made it though that without any issues.

There are many reasons for neuropathy outside of the common obvious ones. We did a big work up on all of these obscure labs etc and nothing showed up.

A few weeks ago, I ran across an article that mentioned statins causing neuropathy. I had been started on a statin about the time my tingly toes started. I stopped my statin and the neuropathy seems to be getting better. I was on the statin because the oncologist cardiologist felt that every person past a certain age should be one one. We will discuss the risk/benefit in a few weeks at my next appt.

mdln, thank you for the link! The more I learn, the more interesting I find this subject. Because we lead what I consider to be a healthy lifestyle I assumed I my body was getting what it needed. So wrong!

RNmom, I had read about the possible relationship between statins and neuropathy and d.c.'d mine, too. I had been on it for about a year and a half before onset of n/pathy so I wasn't really expecting that it was the culprit but dr. said worth trying. From what I understand the downside of starting, stopping and restarting is that the numbers may not return to as low as they were.

I have neuropathy in my feet from a pinched nerve in my lower back. Doctor says my B-12 level is okay, but I may ask her if taking more may help. I've also heard that you should take the sublingual type, because stomach acid destroys B-12.

Whatsayyou, luckily my numbers are fine without being on the statin. I was just on it because it is advised if you are diabetic or old to be on one. I felt it was worth trying to see if my toes got better.

woodrose, I'm pretty sure that my neuropathy stems from my back, though two neurologists that I've seen dismissed the idea. On the other hand a podiatrist that I saw said that it was probably my back, though he didn't do any testing. It really only bothers me when at night, or other times when I'm not active. The podiatrist prescribed a low dose of gabapentin at night only, but after two nights it left me feeling depressed, and I never took it again.

Walking a lot actually helps my neuropathy, and during times when I've done yoga it seems to have gotten better.

i am an uncommon B vitamin rage victim ( Victim per my kids, but I agree)

Neuropathy in my feet for years after a concussion. Open to any advice!

Interesting because during the past three years I too have developed idiopathic (so far) neuropathy in my toes. Still trying to figure out why. It started with a couple of toes and is spreading. It's not diabetes and I'm not taking statins . . . yet. I had a full blood workup, I do have slight anemia but I have always had slight anemia. I take iron and also B vitamins, although I know absorption can be an issue. I don't know what it is with the toes, but sometimes it keeps me up at night, because they ache too. So I was thinking it might also be arthritis and this is how I experience it. It gets worse the more I am on my feet and if they get damp or cold. I feel like I have rubber toes. I haven't yet gone to a neuropathist, I am still dealing with an eye issue, one rickety body part at a time . . .

Oy vey, just did a little search to figure out how to spell neuropathist (not sure that is even a medical specialty) and this popped into my search, from WebMD. Seems like if I don't get on this it could keep progressing to worse things. Sigh. The link is about diabetes but actually the text covers general neuropathy. I don't have diabetes, no blood sugar issues. Low thyroid but that's under control and reads normal on blood tests. https://www.webmd.com/diabetes/peripheral-neuropathy-risk-factors-symptoms

These are the labs that were run on me. Hepatitis panel, monoclonal gammopathy panel, B12, folic acid. I had recently had an A1C so that wasn't checked, They also checked my magnesium but I not sure if that was related to the tingly toes or if it was because I was always low during chemo.

I thought that when one had back issues, the leg pains (or foot in this case) were not bilateral or in both feet equally. 🤷🏿‍♀️

I thought that when one had back issues, the leg pains (or foot in this case) were not bilateral or in both feet equally.

That's exactly why the neurologists said that the cause wasn't in my back, since I have neuropathy in both feet, but the left foot is worse.

When I first started having pain fro my back issues, I had the worst of the pain on one side only. Last year I was sent to a pain specialist by my back surgeon's office. After the this specialist performed several very painful procedures, I now have it about equally on both sides. I thought a pain specialist was supposed to help provide relief from pain, but apparently this one didn't get the memo.

It's truly a very frustrating condition! And, I think when people who aren't familiar with neuropathy hear the word, they think a little numbness in your feet so what's the big deal? Um, no, it can be quite debilitating.

Yes, my MIL had lymphedema and I didn't truly understand her pain. Now I wish I had been more sympathetic.

Yes when mine started I thought maybe sciatica or some type of main nerve pressure, because I had a lot of foot and leg numbness when I actually had sciatica and was diagnosed with a herniated disk. But the numbness is in both feet this time. So frustrating, no quick and dirty answers . . .

Ipink, you've had your B12 tested?

Yeah, I had a full blood panel beginning of the month, I'll have to double check. I only remember what was flagged as "out of range" which was cholesterol and a minor flag on iron, not a deficiency, just low end of spectrum, typical for me. I can't remember about B12. I know it is expensive to test for it . . . so I would suspect not. I take a full B vitamin regime every day. Don't want to pee away more money so best to find out and then deal with absorption issues . . . if that's what it is. Hard to say, it might take a while and lots of money for tests to find out, which is why I have been dragging my feet. I have poor insurance coverage.

Interestingly, my B12 was in the normal range but on the low end. Neither of the two doctors who received copies (the nerve conduction doc who ordered it and referring doctor, a foot and ankle specialist) mentioned the B12 so I assumed it was not the culprit (stupid, stupid me for not following my gut and asking and/or beginning B12!). Fortunately, I took the NCS and bloodwork to my PCP who suggested trying B12. This has been a 7-month emotionally draining journey but is now seemingly on the road to a good resolution. Hoping the same for you!

I've had neuropathy in both feet for 9 years as a result of chemo. Alpha lipoic acid, which is an amino acid, helps mine a lot. It's not painful, just a 24/7/375 tingling that varies in intensity. My B12 level is normal now thanks to a monthly injection. I found out about alpha lipoic acid on a cancer forum I'm in. Many women had success with it and it's been great fir me, too.

I was just reading about alpha-lipoic acid last night: https://www.healthline.com/health/neuropathy-supplements#alpha-lipoic-acid

"2. Alpha-lipoic acid for neuropathy

Alpha-lipoic acid is an antioxidant that may be useful in treating neuropathy caused by diabetes or cancer treatment. A 2021 studyTrusted Source says it may lower blood sugar levels, improve nerve function, and relieve uncomfortable symptoms in the legs and arms such as:

• pain
• itching
• tingling
• prickling
• numbness
• burning

It can be taken in supplement form or administered intravenously. You may take 600 to 1,200 milligrams per day in capsule form.

Foods that have trace amounts of alpha-lipoic acid include:

• liver
• red meat
• broccoli
• brewer’s yeast
• spinach
• Brussels sprouts

Alpha-lipoic acid has been shown to have a positive effect on nerve conduction and to reduce neuropathic pain. A small 2017 study found that alpha-lipoic acid was useful in protecting against oxidative damage in people with diabetic neuropathy.

One important note of caution: If you are deficient in thiamine, or vitamin B1, as a result of excessive alcohol use or for another reason, alpha-lipoic acid may have a toxic effect on your system."

Below was written by my DIL who has vast experience in this subject.

whatsayyou8, I am sorry to hear that you are struggling, what you’re feeling is extremely uncomfortable. I was diagnosed with Pernicious Anemia 8 years ago and have been on b12 intramuscular injections every 2 weeks since finishing my loading doses. B12 deficiency is tricky. Someone like me requires injections because by body won’t absorb b12 orally. Although there can be many reasons for b12 deficiency, there are instances where your body is absorbing it but not metabolizing it efficienctly. in order to absorb and use b12 efficiently, other vitamins and minerals needs to be well balanced as well. Folate is extremely important, as are good levels of things like iron, c and others.

As far as the tingling goes, that is caused by the nerves getting what they need. i was sick for long enough that a decent amount of damage was done and the tingling was so painful i had to be put on medication to help. If you are uncomfortable enough talk to your doctor about Lyrica snd Gabapentin. Good luck and feel better.

Blubird, that was so sweet of your DIL; many thanks to you both!! I will definitely look into folate, C and iron. So very helpful!

I now believe the tingling is the regeneration process because every day the numbness improves more and my panic in thinking the neuropathy may be returning has significantly diminished (the tingling at the onset and regeneration are a similar sensation, at least for me). My incredulity that all of this happened (sudden onset and rapid progression of the neuropathy, being dx'd as having "severe" neuropathy~~feet, legs, thighs and hands~~ and seeing a very bleak future, to seemingly complete recovery), is truly off the charts. Again, heartfelt thanks to you and your DIL!!!