As I read through threads like this one, I wonder how long I was B12 deficient before figuring it out. I had complained of carpal tunnel type pain for years before I was diagnosed with it. I remember my mom teaching me to crochet and me complaining that it hurts my hands and she would tell me I wasn't doing it enough and that I was too young to have such pain. That was in my 20's. I know now that I had gluten problems then, so I am wondering if my neuropathy was in the beginning stages way back then. My sister was diagnosed with vitamin deficiencies at a very young age, maybe 6 or 7--of course, celiac disease was not thought of then, not for us anyways.

How do we know how much B12 we should be taking? Doctors only go by the standard levels and on my last blood test (the last one he checked my B12 level anyways) my level was 1277, of course I was taking a daily dose of 1200mcg of B12 then, now I take 2400mcg and feel the same. The progression of my neuropathy is slow, which I am very grateful for--yet, how do we know when enough is enough?

but B6 too that you need for carpal tunnel.

I found only the activated form called P5P worked for me.

Hypothyroidism also contributes to carpal tunnel. Excess fluid is
deposited under the ligaments with low thyroid and this compresses the
area and pinches the nerves.

http://64.233.167.104/search?q=cache...lnk&cd=3&gl=us

If I were you I would also read up on the benefits of adding n-acetyl cysteine, alpha-lipoic acid, and acetyl-l-carnitine to your supplements.

The combination of all three can help repair and protect against some kinds of neuropathy and in general, they help protect everyone against a host of different medical conditions that can be caused by environmental stressors.

The amino acid arginine also helps repair nerve damage.. And also make sure to take fish oil, thiamin, and other B-complex vitamins.

Also, anyone who is having neuropathy issues, you should check for hidden *mold* in your environment. Even if you don't smell or see anything, it can be hiding inside of walls, attics, basements, etc. Spore counts may not show anything, but the mold toxins persist as a coating on tiny fungal fragments. Then the normal motion of air through a building can spread it everywhere - it can coat your possessions and cause major inflammatory issues that can ruin your health and send your immune system into an inflammatory nightmare.

Once they enter your bloodstream via inhalation, dermal absorbtion, or ingestion - (Inhaled toxins are very effective but also 30% of inhaled mycotoxins end up in the stomach as well) they recirculate in your bile and they can damage your liver, kidneys, gall bladder, stomach and GI tract, as well as your thymus, pancreas, brain, eyes and immune system.

They can cause lesions in your brain, which show up as 'UBO's on your MRI.

Often, this causes memory problems, chronic fatigue, etc. And much more.

Mold toxins can be very destructive of your health and they can persist for a very long time after the actual mold growth has been 'killed'. For decades or even longer after a water intrusion issue has been fixed. Once your body goes into an inflammatory state, recognizing what exactly is setting the inflammation off is hard because the inflammation lasts a long time because the toxins are low molecular weight and they permeate your entrire body, and store up in your fat. You can get them out with cholestyramine but often they have already done a lot of damage. And you also have to get out of mold completely.

Mold and even the dust of old now-dead mold needs to be physically removed, not just covered up and hidden.

I live in a basement apartment

And Rose, yes I have been worried about thyroid. I posted my numbers earlier in this thread. The doctor didnt think thyroid was a problem, but I am not so sure.

Most doctors know little more about thyroid than B12. It can take a very long time to find one who will diagnose you correctly even after you learn the narrowed "normal" range, etc.

Oh, I see that you did. I don't have those ranges in my brain. I only remember that the TSH most think is fine is not. The fact that you got the other tests is remarkable. Most can't get them to do them.

Mary Shomon thyroid placed in a search engine will get you loads of info.

rose

So glad I found you all. Our experiences have much in common. Anyone found a correlation between long-term b12 deficiency (like almost 20 years of being told I was a hypochondriac) and epileptic-like condition? I am sooo sensitive to motion and light. Am going through a battery of testing, but it's getting pricey. Wondering if I should just go it alone like I have been? I'm just thrilled someone finally listened to me, that I have feeling back in my fingers and toes, that I'm healing somewhat normally (my once OK skin looks like it could hold a day of rain.)

a connection between gluten intolerance and malabsorption
of B12.

Then there is the further connection between gluten intolerance and seizures.

Your link may be gluten intolerance, causing the low B12.
So I would investigate that.

http://neurotalk.psychcentral.com/thread1872.html
If you go to the link in The Gluten File... there are papers illustrating this link.

This is all so fascinating and makes perfect sense. Have realized a gluten connection with other symptoms for years, but I had never run across this. My 15 year old daughter is just starting up with this and is now gluten-free, receiving weekly B12. Hers is a brain worth preserving. Thanks again.

Perhaps you would know, how long to completely recover from vit B12 deficiency?

I recall that rose, who is the original poster who brought B12 issues publicly to this board and it predecessor, said it was taking years for her to recover.

If you have severe damage, recovery is slower, and may not be complete if nerves have actually died.

For example in Japan where the terrible accident occurred with Vioform (clioquinol), people were permanently damaged, and blinded due to low B12.
http://www.multinationalmonitor.org/...mm0493_11.html

This devastating accident led to Japan being very aggressive in treating low serum B12 levels. They typically treat below 500-550.

So I would say recovery depends on how severe the damage has become.