Wrong Diagnosis numbness in both legs!

Originally neurologist thought it was relapse but I'm having more tests as my symptoms are unusual for MS (identical symptoms on both sides) it's more usual for that to happen with Primary Progressive my neurologist is excellent so I'm sure I will get some answers - thank you for your reply!

I have tested very high b6 twice over the past year. I have twitching and tingling in the lower legs and upper back. I'm always interested when someone posts a reply like you have.

Do you know of a way to reduce the levels of vit b6 in my body?

I have heard this before with B6 when I was tested my B12 was causing some issues and I now get B12 injections but I'm not sure how to reduce levels of B6

The only two ways without stopping supplementation, as that it usually the cause, is i know increasing protein and increasing b1. B1 has an inverse relationship to b6. If you were to do that, I would have labs drawn frequently to monitor. You don't want to throw off a bunch of vitamins you know. Protein has a direct relationship. The more protein, the more b6 is needed because b6 binds to protein. So in a study on cats for example, I think it was cats, when they tripled their protein, their b6 fell and they required 3x as much b6 as well to keep it from falling. You could try it. I had b6 toxicity from supplements so when I stopped, it went back to normal, but I know that's not the case with everyone and it mimics MS. B6 is nasty nasty nasty stuff and high levels show toxicity.

I'm trying the protein route. The b1 offset is interesting, I may try that out of desperation since my levels seem to be rising and my Neuro issues continue. I just wish I had a better PCP/GP that cared about this. She brushed my high levels off stating many people test high with b6!

I appreciate your response.

I also wear socks to bed, but usually kick them off before morning.

Yeah the doctor that told me to take, not told me to take, insisted I take a b complex, when I went back and was like all of my issues have been from your stupid b6 vitamin and the whole time you've been telling me to take it for these same issues! I had told him the first week I took them I thought they could be the cause and he said impossible. Not impossible and when I came back with the literature that proved it, he freaked and was like well my attorney will have to handle this. I can't say anything now. 😡😡😡😡

I just found this. Whether it is true, I don't know, but if you do take b1 and it helps, please let me know!

See below

Hi Thomas,

You know a lot about B6, and you've done tons of research. I just wanted to share my experience though, for what it's worth.

I started taking vitamins to deal with a thyroid issue. After a few weeks on a B-50 complex, I noticed my toes were burning sometimes. Some research led to a lot of scary stories about B6 toxicity. All my symptoms matched so I immediately stopped the supplements. My burning toes and tingling finger symptoms didn't really go away. I read it can take a while. So I was patient. I didn't avoid B6, but I didn't take B6 either. I took all the B-vitamins separately so I didn't get any B6 that way.

After a trip abroad and a few days with not much sleep, I developed a sore burning tongue! The zapping in my feet got worse. A few times at night my entire leg hurt. My arms were going numb completely at night sometimes.

I was taking every vitamin except B6. B6 deficiency can cause a sore tongue. So I started to question the B6 thing. The tongue thing got worse and worse, so I was desperate to fix it. I started with small amounts of B6, and immediately felt better. I felt much happier! But at the same time, i noticed more burning and zapping in my toes and fingers.

It's a long story but eventually I figured some big things out. Thiamine. Thiamine deficiency will cause nerve pain and muscle pain. Thiamine was the reason for all the zapping in my feet, and the stabbing pains in my legs. I was taking thiamine, so I didn't think it was thiamine. But apparently some people have a transport problem with thiamine and only huge doses will cross the small intestine. It's similar to what some people have with B12.

Unlike B6, thiamine is extremely safe and there is no upper limit. It's worth a try for anyone with that burning and tingling toe thing, take thiamine and see if things get better. 200mg of thiamine with each meal for a few days. A large dose is important to compensate for absorption problems, which is usually the cause.

After a week of high dose thiamine, my burning toes are gone. After six months.

I'm taking B6 as well and feeling so much better. I slowly raised my B6 and found that I actually feel best right now with a B-100 complex (100mg of B6) extended release tablet twice a day. That's 200mg of B6!!! I never even had B6 toxicity.

Thiamine deficiency is pretty rare, but can happen in people with thyroid issues, and anything affecting the absorption. Ironically, thiamine deficiency can lead to absorption problems..... sooooo then you just stay thiamine deficient unless you take a ton of thiamine. Also, illness of any kind, pregnancy, lactation, and diarrhea can deplete thiamine stores causing deficiency. Alcohol also uses up thiamine stores.

The reason a person will develop burning toes after even a few doses of B6 is that B6 helps get iodine into the thyroid. If the thyroid increases for a few days, thiamine stores can be depleted, leading to thiamine deficiency symptoms.

From all I've read and from my experience, B6 supplementation leads to thiamine deficiency. Fix the thiamine deficiency, and it fixes the nerves.

BTW, thiamine is needed to get magnesium into cells.