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B12 Neuropathy?

GreenMachineX

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I’ve been experiencing bizarre pins and needles in mostly my right arm and both legs/feet as well as a strange skin oversensitivity that I’ve experienced only a couple times before (pretty sure these were times when I stopped my multivitamin). The pins and needles started a week after stopping absolutely everything (except magnesium), and shortly after angular cheilitis showed up as well. Could a b12 deficiency show up in a matter of days of stopping my b12? How long would it take symptoms to go away after starting up again? I’m nervous about going too high because I’ve triggered some crazy things recently that resulted in ER trips and terrible terminal insomnia resulting in 3 hours sleep a night which results in me getting sick every time.

This next question I hope I describe correctly: if b12 causes paresthesia, does the tingling show up randomly, or in areas more prone to it? In other words, I believe I have very tight muscles from working out and it’s easy for them to start to fall asleep. When these symptoms kicked off, my left arm was doing it too but after stretching (shoulder rehab, due to impingement syndrome) my left is fine now and it only happens in my right arm. Is that how paresthesia works or is it definitely only due to impingement and tight muscles?

Thanks! Any advice or any thoughts or experiences welcome!

I’m currently taking 10mg p5p, 200mcg methylfolate and 300mcg b12 as of today and yesterday.
 

Learner1

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B12 doesn't work in a vacuum. It works with other nutrient cofactors, including B2, B3, B6, folate, magnesium, potassium, and amino acids.

Too much, or more likely, too little B6 can cause neuropathy and B2 deficiency is linked to angular chelitis. Other nutrient deficiencies can cause them, too.

A thorough nutrient test, like a Genova Diagnostics NutrEval, might help you find deficiencies or imbalances.
 

GreenMachineX

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Thanks. I’m unsure what you mean by working in a vacuum?

I’m experimenting with the dosages of all the b’s but I’m pretty sure I’m getting enough b2. B6 confuses me because I thought 25mg p5p was giving me insomnia, but as of last night, 95% sure it was the zinc picolinate actually. Taking 10mg p5p now.
 

Learner1

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Thanks. I’m unsure what you mean by working in a vacuum?
It doesn't work by itself. It works with many other nutrients. If you're short of something, it bottlenecks the whole process. This picture gives you an idea of the various nutrients that work together in the methylation process...

https://goo.gl/images/svcxDn
I’m experimenting with the dosages of all the b’s but I’m pretty sure I’m getting enough b2. B6 confuses me because I thought 25mg p5p was giving me insomnia, but as of last night, 95% sure it was the zinc picolinate actually. Taking 10mg p5p now.
I honestly don't know how you can experiment and figure it out... I'm taking 350mg of P5P. I would have never figured it out experimenting.

B6 is used in heme and sphingolipid synthesis, as well as the methionine cycle and glutathione production. If you're short, any of those processes can be compromised.

Having good lab work can save a lot of guessing and fighting mysterious symptoms.
 

GreenMachineX

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You’re right. I probably need to just get some lab work done. I might just get a b6/folate/b12 blood test from Life Extension first because that’s only $90 or so and I’m pretty sure that’s where my problem is. $350 for the Genova NutraEval just isn’t do able right now.

My apprehension with the blood work angle is that for years I took other multivitamins and supplements without any issue. But I went overboard on the p5p and Methyl B’s just a couple months ago, then cold turkey off of everything, and now I can’t seem to get back to point A. It’s like I permanently changed something by taking 100mg b6/p5p, 1200mcg methylfolate and 1200mcg m-b12 and 400mg TMG for just a couple weeks and going back to what I took 2 years ago (or even 6 months ago) doesn’t work anymore. I just don’t get it.
 
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Learner1

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You really need to know what your status is for B2, B3, B6, methionine, glutamine, glycine, cysteine, B1, and molybdenum are, too.

People focus too much on folate and B12. They're important, but many of the unhappy symptoms people experience are due to a lack/imbalance in the other nutrients.

In my case, my need for B2, B6, and glycine are enormous. I couldn't have figured it out without testing, as the ratios I need were so wildly out of the normal range.
 

pamojja

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You’re right. I probably need to just get some lab work done. I might just get a b6/folate/b12 blood test from Life Extension first because that’s only $90 or so and I’m pretty sure that’s where my problem is. $350 for the Genova NutraEval just isn’t do able right now.
I'm in the same situation that I couldn't afford a NutraEval - it's not just the one-time 350,-, but because that has to be done repeatedly after dose-adjustments to get anywhere.

The problem in my case with serum testing B6, B9 and B12 is, that they are all sky high above normal. But by slowly titrating the doses up over years - along with all co-factors - homocysteine still hasn't consistently stayed in a more healthy range. Measuring RBC folate, B6, or Holo-Transcobalamine out of my pocket hasn't added anything of value.

I honestly don't know how you can experiment and figure it out... I'm taking 350mg of P5P. I would have never figured it out experimenting.
Having titrated gradually up to 170 mg/d over the last 9 years (with different ratios of different B6s), I probably will figure it out one day. Just takes so much more time with my cautious slow approach... On the other hand, haven't had any bad side-effects (except a bid of a chaw-tension above a certain dose of choline).
 

Learner1

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Measuring serum levels will show high since you're taking the supplements. FIGLU and methylmalonic acid (MMA) are better for folate and B12. My serum B12 was recently >1999 but MCV and MMA were high, indicating deficiency and that the stuff in my serum isn't getting into my cells.

Also homocysteine and an amino acid panel, which are standard LabCorp tests, can be useful.

The Easy Pay amount with Genova is currently $199 in my area.
 

CFS_for_19_years

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Thanks. I’m unsure what you mean by working in a vacuum?
Taking too much of one B will cause a deficiency in another B, which may be why you have angular cheilitis. You might have a B2 deficiency, which you wouldn't have if you hadn't been taking high amounts of the other B vitamins. Angular cheilitis can also indicate an iron deficiency.

I would stop taking all B vitamins and see if the angular cheilitis goes away.
 

GreenMachineX

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Thanks everyone. I haven’t taken any vitamins in 3 days and actually, the insomnia is gone, the weird skin hypersensitivity is drastically improved, and I think the angular cheilitis is improving as well (just more slowly). But, even then, I wasn’t taking any b vitamins by themselves. The doses I’ve mentioned were actually in various multivitamins I have here so I was getting all of them together. Guess it was still throwing something off?

Would being off the vitamins for a few days and then getting serum blood levels show a more accurate level or will they still be off the charts since I was supplementing ?
 

Learner1

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The serum values will still be high for awhile.
I do NutrEvals without stopping supplements and they still show deficiencies if there are any.

Not taking B vitamins is not the answer. If you had that big a reaction, something is definitely out of balance. B vitamins are essential in methylation, hemoglobin synthesis, sphingolipid synthesis, DNA replication, immune system and endocrine function.
 

GreenMachineX

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The serum values will still be high for awhile.
I do NutrEvals without stopping supplements and they still show deficiencies if there are any.

Not taking B vitamins is not the answer. If you had that big a reaction, something is definitely out of balance. B vitamins are essential in methylation, hemoglobin synthesis, sphingolipid synthesis, DNA replication, immune system and endocrine function.
Yeah, I’m just letting trying to let some symptoms resolve by stopping it all then I know if it’s related to that or something else. I’m going to start a different multi that appears more balanced overall.
 

pamojja

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But I went overboard on the p5p and Methyl B’s just a couple months ago, then cold turkey off of everything, and now I can’t seem to get back to point A.
Did you get adverse reactions from going overboard, or only after going cold turkey off everything?

Yeah, I’m just letting trying to let some symptoms resolve by stopping it all then I know if it’s related to that or something else.
With this later reply you seem to imply the first, but with the former it seemed otherwise?
 

GreenMachineX

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Did you get adverse reactions from going overboard, or only after going cold turkey off everything?



With this later reply you seem to imply the first, but with the former it seemed otherwise?
I did have adverse reaction to going overboard; an overmethylation nightmare. It felt like I took a stimulant, with anxiety, chest pain, nausea/heartburn, palpitations, even went to the ER for it. Then cold turkey was horrible too. But the weird thing is, everything I read implies overmethylation should reduce histamine but I also had allergic reactions I never had before during that time.
 

JES

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I did have adverse reaction to going overboard; an overmethylation nightmare. It felt like I took a stimulant, with anxiety, chest pain, nausea/heartburn, palpitations, even went to the ER for it. Then cold turkey was horrible too. But the weird thing is, everything I read implies overmethylation should reduce histamine but I also had allergic reactions I never had before during that time.
Yep, this is the reaction I had as well, minus the ER bit. I think there is little to no evidence to support the idea that methylation has anything to do with this disease. The parasthesia was probably not caused directly by B12 but by one of the downstream effects of increased methylation or other changes that this supplement may trigger.
 
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Although this conversation is one year "old", I share my experience because it could help other people too (I hope it will!).
My doctors (neurologist, several urologists) have kept testing my B12 for years. They said that low B12 can lead to an increase of neurophatic pain, such as burning, tingling, etc.
My values were always right ... so I didn't get any therapy.
But many people I know who suffer of peripheral neuropathy (especially in the urinary tract, but also fibromyalgia) had great benefits with Dobetin injections. It raises B12 levels and repairs nerves.
I hope this will help some of you ...
 

Learner1

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Cyanocobalamin is not a good firm of B12. It has a cyanide molecule that must be detoxed by ones liver using up glutathione.

MB12, AB12, or HB12 all are better forms.

Serum B12 tests are pretty useless. They'll look ok or even high if one is investigating B12 in animal products or supplements.

Methylmalonic acid is the gold standard and can be ordered by any compent doctor.

Ensuring B12 adequacy is important for nerve function, improving fatigue, and detoxification, All of which can make you feel better. It also needs cofactors to be most effective, so many people need 5-MTHF, B6, B2, magnesium, zinc, potassium, etc.to make it work best.
 
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Dear @Learner1, thank thee for the precise answers!!! They are very interesting and useful.
I'll talk to my neuro-urologists about this to know if I can do something more ... Because some of them said I had to control or rise (even if their were ok) my B6 and magnesium level, which you also mentioned. Others said I shouldn't ... I really hope they will get to an agreement!
Anyway, I am already taking potassium for other problems (due to my continuous antibiotic assumption), glad to know it's useful also for this!
Thanks again! :)
 

Learner1

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thank thee for the precise answers!!! They are very interesting and useful.
You are very welcome.
I'll talk to my neuro-urologists about this to know if I can do something more ... Because some of them said I had to control or rise (even if their were ok) my B6 and magnesium level, which you also mentioned. Others said I shouldn't ... I really hope they will get to an agreement!
This is not something you should leave to these doctors. You are the one living in your body and having to live with the consequences. It is worth some self-education.

B6 is used in over 100 reactions in the body, including formation of myelin that surrounds the nerves, methylation, repair of cell membranes, synthesis of glucose from glycogen (glycogenolysis) and from amino acids (gluconeogenesis), synthesis of amino acids and thus proteins, synthesis of vitamin B3 (niacin) from the amino acid tryptophan which leads to production of NAD+ and ATP (energy), synthesis of hemoglobin, synthesis of neurotransmitters like serotonin, norepinephrine, dopamine and GABA, and development of lymphocytes and proper function of the immune system

B12 is critical for proper functioning of the nervesn, synthesis of DNA, production of the red blood cells and other cells, synthesis of the amino acid methionine from homocysteine thus preventing high blood homocysteine levelsy, and synthesis of proteins and fats. It is also important for preventing fatigue. Permanent nerve damage can result from deficiency.

To do these many important jobs, they need vitamin and mineral co-factors, other substances used in the complex biochemistry. If you are short enough of both if these nutrients, so much that conventional doctors, who get only a few hours of nutrition education in their years of ndfucdl training, are noticing, it's likely that you have a serious problem and something else is going on.

Why do they think you're deficient? Lack of meat and other sources of B6 in your diet? Gut malabsorption? Celiac disease?

Comprehensive nutrient test might be useful to figure out a bigger picture of what nutrients and co-factors you're short of do that you can develop a customized plan to overcome these deficiencies or imbalanced and get your biochemistry running optimally. Look for sample reports at the bottom of this page:

https://www.gdx.net/product/nutreval-fmv-nutritional-test-blood-urine

It is a test of both blood and urine. Once you know what nutrients you need, high quality supplement brands that use the optimal forms of nutrients are Thorne Research, Seeking Health, and Designs for Health. You don't necessarily need to use them, but look up their B vitamin products and familiarize yourself with the firm's of the vitamins they use, which are optimal. They also have products that group co-factors together to make it easier to get what you need - I take both Thorne MethylGuard Plus and Neurochondria together, for example.

The pharmaceutical versions tend to use less effective forms or garbage fillers. And cheap supplements use cheap, less effective forms.

A couple of tests that will clue you into deficiency are MCV and homocysteine. If. MCV is over 94 or homocysteine is over 8, it is typically linked to a deficiency of folate, B6, or B12. Then you need tests like methylmalonic acid, FIGLU, etc to figure out which or if it's all you're short of.

Anyway, I am already taking potassium for other problems (due to my continuous antibiotic assumption), glad to know it's useful also for this!
What's "continuous stibiotic assumption"? If it means you're taking antibiotics continuously, you're probably damaging your microbiome, killing off species you need to metabolize nutrients and/or allowing candida (yeast) to proliferate, causing a slimy coating in your intestines and making it difficult for nutrients to be absorbed. You might also have an oxalate problem which would deplete B6 and cause the formation of sharp crystals in your organs (thyroid, lungs, kidneys, eyes, etc), muscles and joints, and delete you of sulfur and minerals.

Given all of this, you might find a functional medicine doctor might provide more comprehensive help than your neurologists are, and add one to your team.