[LisaAnnB]

Hello All,

I was diagnosed in November with low b12 levels after a year and a half of nonstop tingling and twitching and shocks to my feet and slowly over time moving up my legs and to my wrists along with horrible pain and a lot of other things that happened that are irrelevant at this point.

Upon receiving B12 injections, the progression stopped, but the neuropathy is still horrible. VERY horrible.

Has anyone had any success with their nerves healing? I can't seem to attribute it to anything but the b12 because I was low on it and the neuropathy was very sudden and progressive over a year's time.

Has anyone had success in healing their neuropathy over time?

[Healthgirl]

How low was your B-12? How long have you been taking shots/supplementing?

[mrsD]

If your shots were cyanocobalamin form, and you have the MTHFR mutation, then there will not be a large improvement expected. Cyano is synthetic and some people cannot methylate due to genetic errors, to the methyl form which the body uses.

Also shots tend to be too far apart to be useful for everyone.

I suggest you start oral 5mg (5000 mcg) of methyl type daily on an empty stomach and see if that helps...it can take 3 months or more.

A DNA test would show if you have this DNA problem. If you do the folic acid in your food will not be methylated to methylfolate either, and that would stall your improvements as well.

You can get the DNA test online at 23andme for $99 if your doctor is not informed about it, and refuses to order it for you.
Several posters here over time have had this test and all of them with PN symptoms showed either heterozygous (one gene missing) or homozygous (both genes missing).

[zkrp01]

Originally Posted by LisaAnnB

Hello All,

I was diagnosed in November with low b12 levels after a year and a half of nonstop tingling and twitching and shocks to my feet and slowly over time moving up my legs and to my wrists along with horrible pain and a lot of other things that happened that are irrelevant at this point.

Upon receiving B12 injections, the progression stopped, but the neuropathy is still horrible. VERY horrible.

Has anyone had any success with their nerves healing? I can't seem to attribute it to anything but the b12 because I was low on it and the neuropathy was very sudden and progressive over a year's time.

Has anyone had success in healing their neuropathy over time?

You can search here for the word "healing" and read other posts and the key word will be in red. My b-12 was at 119 when I was in a car wreck. 400 is low end of what is needed. Healing may be too strong a word, or at least it is complicated. As you learn more, healing is sort of a recipe. Part passage of time,part nutricition,part excersize,part managing symptoms until you get where you are going to be. Yes there is improvement, but in the meantime, I had help early on using Mortons Epsom salt Lotion for the tops of my feet that were soooo sensitive at bedtime. Good Luck, Ken in Texas.

[LisaAnnB]

Originally Posted by Healthgirl

How low was your B-12? How long have you been taking shots/supplementing?

My b12 was 210 in November, then I started on methyl injections every other 2-3 days up until now. I supplement with Folate and get a lot of fruits and vegetables and bananas and such. I had a lot of improvement in the beginning of injections and then it just slowed down a lot. The injections use to cause a reaction every time I took them, not so much anymore. My legs would tingle and twitch more.

I have taken methylfolate and get a huge reaction in my nerves from it. not sure what that means.

[Neuroproblem]

Originally Posted by mrsD

If your shots were cyanocobalamin form, and you have the MTHFR mutation, then there will not be a large improvement expected. Cyano is synthetic and some people cannot methylate due to genetic errors, to the methyl form which the body uses.

Also shots tend to be too far apart to be useful for everyone.

I suggest you start oral 5mg (5000 mcg) of methyl type daily on an empty stomach and see if that helps...it can take 3 months or more.

A DNA test would show if you have this DNA problem. If you do the folic acid in your food will not be methylated to methylfolate either, and that would stall your improvements as well.

You can get the DNA test online at 23andme for $99 if your doctor is not informed about it, and refuses to order it for you.
Several posters here over time have had this test and all of them with PN symptoms showed either heterozygous (one gene missing) or homozygous (both genes missing).

the reason why some people get shots is that, they cannot properly absorb b12, lack of intrinsic factor, either by drugs, celiacs or other intestinal disorders can prevent b12 absorption. from what ive read on b12 deficiency, the neurological damage to nerves is sometimes permanent i think. drugs like chronic use of antacids, h2 antagonists, like prilosic, and some 1st gen antihistamines can slow it down. it can take months to recover, and nerve damage caused by b12 could become permanent.

[Kitt]

Welcome LisaAnnB.