1. < Neuropathy

severe peripheral neuropathy and vitamin B6

Posted by pain3relief @pain3relief, Feb 9 10:43pm

Hi,
I suffer from severe peripheral neuropathy and have heard that B6 can have an effect on neuropathy.

I take multivitamin and magnesium supplements, that have over 60mg of B6. The RDI is 1.7mg.

Does anyone have any information or references that B6 would be adverse to my condition.

Thanks.

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grampalou | @grampalou | Sep 3 11:55am
In reply to @ray666 "Good morning, @pain3relief, and welcome to Connect! I, too, have peripheral neuropathy, or, after a year..." + (show)
@ray666

Good morning, @pain3relief, and welcome to Connect!

I, too, have peripheral neuropathy, or, after a year and a year of trying to arrive at a more precise diagnosis, I’m now able to say I have large fiber (predominantly sensory, with a dash of motor and autonomic) multifocal polyneuropathy—a mouthful, I know. Fortunately––and boy, do I mean fortunately!––I have no pain, none whatsoever; my symptom is twofold: wobbly balance and unsteadiness walking. Until my neuropathy, I’d not heard of the B6 “controversy.” Like so many of us, I was confused at first. In one place, I read: You must have an adequate amount of B6; in another, I’d read: Be careful because B^ can be toxic (mimicking neuropathy symptoms)! When my neurologist prescribed a “medicinal food” called EB-N5, telling me it would help keep my B6 load up to snuff, I became even more confused––and a bit alarmed (Why would my neurologist want me to take something with added B6 if B6 is toxic?) He was the one who first explained to me (also @johnbishop) that B6 comes in two distinct “flavors: pyridoxal phosphate, which is water soluble and non-toxic (what I’m getting in my EB-N5), and pyridoxine hydrochloride, which the body can over-accumulate and is toxic (the B6 we find in all of our favorite supplements). I used to take a host of supplements. I’ve since stopped taking supplements containing the potentially toxic B6 (pyridoxine hydrochloride) and sticking only to my EB-N5 with its non-toxic pyridoxal phosphate. The best news? I feel pretty good except for unsteady standing and my silly way of walking.

I wish you success as you learn more about your own neuropathy. And again, Welcome to Connect!

Cheers!
Ray (@ray666)

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Thank you so much for clearly explaining the difference between the two B6's.
So very helpful.
Grampa Lou

REPLY
1 reply
Ray Kemble | @ray666 | Sep 3 2:46pm
In reply to @grampalou "Thank you so much for clearly explaining the difference between the two B6's. So very helpful...." + (show)
@grampalou

Thank you so much for clearly explaining the difference between the two B6's.
So very helpful.
Grampa Lou

Jump to this post

Hello, Grandpa Lou (@grampalou)

No matter how confident I may feel about the two B6s, pyridoxal phosphate vs. pyridoxine hydrochloride, I intend to monitor my intake and levels very, very carefully going forward.

Stay well. Enjoy the sweet fall weather that’s just ahead.

Cheers!
Ray (ray666)

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1 reply
grampalou | @grampalou | Sep 3 9:01pm
In reply to @ray666 "Hello, Grandpa Lou (@grampalou) No matter how confident I may feel about the two B6s, pyridoxal..." + (show)
@ray666

Hello, Grandpa Lou (@grampalou)

No matter how confident I may feel about the two B6s, pyridoxal phosphate vs. pyridoxine hydrochloride, I intend to monitor my intake and levels very, very carefully going forward.

Stay well. Enjoy the sweet fall weather that’s just ahead.

Cheers!
Ray (ray666)

Jump to this post

Thanks, Ray.
I'm 78 and only started feeling
Like I'm walking on pillows but no pain. I have bought a supplement with all of the B's but didn't know there was a difference. I'll have to check.
I have been on two devices 2 times a day. One a tens unit used by Cancer Centers of America and a red light device. Haven't noticed an improvement although I have been using for few months. Also taking a supplement of ten Chinese mushrooms.
Not sure if anything is working but better than doing nothing other than taking gabapentine which was all my "expert" neurologist can offer.
Good luck with your B's,
Grampa Lou

REPLY
2 replies
bb0753 | @bb0753 | Sep 4 8:12am

Although my b6 was 5x high normal the neurologist said I just had idiopathic neuropathy. I was taking melatonin with 20mg pyridoxine hydrochloride b6 for several years. The neuropathy came on slowly over 3 years. After stopping the b6 and staying well hydrated for 3 more years the neuropathy has not improved and is slightly higher in my legs. No balance or pain issues just tight compression feeling.

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bb0753 | @bb0753 | Sep 4 8:16am
In reply to @johnsonje62 "I was diagnosed with peripheral neuropathy about 1 year ago with foot and lower leg numbness..." + (show)
@johnsonje62

I was diagnosed with peripheral neuropathy about 1 year ago with foot and lower leg numbness plus occasional body tremors. My neurologist did a B6 test which showed that mine was too high but I was only taking 25 mg per day which is supposed to be safe. The doctor told me to immediately stop all supplements with B6. It took about 3 months but I finally got back to normal and PN went away. The P5P version of B6 is supposed to be less likely to accumulate in the body but if you happen to have the MTHFR gene mutation which as many as 40% of people of European descent supposedly do, your body absorbs too much B6 so it may not be safe to take any version of B6. Also, watch our for fortified foods like cereal because many of them had B6 added to them.

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Johnsonje62
Did your neuropathy come on suddenly at high level or did it progress very slowly?

REPLY
johnsonje62 | @johnsonje62 | Sep 4 10:56am

My neuropathy hit me almost all at once. I was just laying on the couch when, out of the blue, both of my feet and lower legs got tingly and numb up to my knees. A couple of days later (as I recall) I started getting internal body tremors. My feet were almost entirely numb for months even after I stopped the B6 supplements. For some of us it gets stored in our tissues and is very hard to get out.

REPLY
2 replies
Ray Kemble | @ray666 | Sep 4 1:18pm
In reply to @grampalou "Thanks, Ray. I'm 78 and only started feeling Like I'm walking on pillows but no pain...." + (show)
@grampalou

Thanks, Ray.
I'm 78 and only started feeling
Like I'm walking on pillows but no pain. I have bought a supplement with all of the B's but didn't know there was a difference. I'll have to check.
I have been on two devices 2 times a day. One a tens unit used by Cancer Centers of America and a red light device. Haven't noticed an improvement although I have been using for few months. Also taking a supplement of ten Chinese mushrooms.
Not sure if anything is working but better than doing nothing other than taking gabapentine which was all my "expert" neurologist can offer.
Good luck with your B's,
Grampa Lou

Jump to this post

Good afternoon, Grandpa Lou

Your words ("I'm not sure if anything is working, but it's better than doing nothing...") had me nodding. "Uh-huh, I know what you mean!" That's why my medicine chest is overflowing with medications – supplements, too – because I'm unable to pick one up in my hands and say, with certainty, "You work, so you're a keeper," or "You don't work, so out you go!" 🙂

Cheers!
Ray (@ray666)

REPLY
celia16 | @celia16 | Sep 4 6:00pm
In reply to @johnsonje62 "My neuropathy hit me almost all at once. I was just laying on the couch when,..." + (show)
@johnsonje62

My neuropathy hit me almost all at once. I was just laying on the couch when, out of the blue, both of my feet and lower legs got tingly and numb up to my knees. A couple of days later (as I recall) I started getting internal body tremors. My feet were almost entirely numb for months even after I stopped the B6 supplements. For some of us it gets stored in our tissues and is very hard to get out.

Jump to this post

What do you mean by internal tremors? …….twitches? Shaking? Also, how long before you saw a significant reduction in the numbness?

I’m dealing with B12 deficiency, but just discovered my B6 is borderline. Waiting to speak with my neurologist about it.

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johnsonje62 | @johnsonje62 | Sep 4 7:18pm

Yes, internal shaking. I especially noticed it when laying down. My numbness starting getting better about 3 weeks after I got off all B6 supplements but it was about 4 months before I felt like normal again. B6 is weird in that a deficiency and a toxic level of it have similar symptoms. I have heard that B12 deficiency can cause similar symptoms. Best of luck getting answers to your problem.

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1 reply
celia16 | @celia16 | Sep 4 7:48pm
In reply to @johnsonje62 "Yes, internal shaking. I especially noticed it when laying down. My numbness starting getting better about..." + (show)
@johnsonje62

Yes, internal shaking. I especially noticed it when laying down. My numbness starting getting better about 3 weeks after I got off all B6 supplements but it was about 4 months before I felt like normal again. B6 is weird in that a deficiency and a toxic level of it have similar symptoms. I have heard that B12 deficiency can cause similar symptoms. Best of luck getting answers to your problem.

Jump to this post

My B6 was borderline low, so…..I’ll discuss with neuro. I don’t want to risk going over though. Thanks

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