severe peripheral neuropathy and vitamin B6

How often do you have the B12 injection

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)

@ray666 . Hi Ray. Just wondering if you are still taking the doctor prescribed vitamins you mentioned with the P5P b6. Really curious to know if this has helped the numbness etc. We have the same diagnosis and symptoms. Thanks for any info you have. Bonnie

Good morning, Bonnie (@bb0753

Yup, I'm still taking EB-N5, that vitamin combo (or, as they call it, 'medicinal food'), with the P5P B6 you inquired about. I had paused taking it for a month but have now resumed. I had been taking EB-N5 twice daily for a year, but when my supply ran out, and the manufacturer wrote to ask if I wanted a new supply, I decided I would get the advice of my two neurologists. ('Two' neurologists sounds kind of posh. I've ended up with two neurologists purely by accident. One is quite far from home; I had thought to 'drop' him, but both neurologists appear eager to continue working with me; in the end, I decided I'd keep both.)

You may know from other posts I've left that last spring, I came down with a nasty sepsis infection. My particular 'brand' of sepsis, saddling me with a host of sepsis symptoms, also some considerable added balance challenges, challenges in addition to the ones with which my PN had already gifted me.

Up until the sepsis, I hadn't thought EB-N5 had done me any harm (in fact, it may have done me some good; a second EMG showed no progression in my PN). But, because sepsis, along with PN, had made a Mulligan stew of my balance, I couldn't be sure if continuing with EB-N5 was worth it. That's why I sought the advice of my two neurologists––and both recommended continuing. And so I have.

Can I personally endorse EB-N5? Not really. Can I say any bad things about it? No. That's been my experience with PN and the gazillion hoped-for-helpers––pills, ointments, therapies, etc. … you name it––we recognize that we have an incurable disease; nonetheless, we pursue relief––even temporary relief––fingers crossed every step of the way.

My very best to you, Bonnie.

Cheers!
Ray (@ray666)

Thanks Ray for your answer. Yes I am trying various things. I thought my PN was caused by b6 toxicity since my b6 was 5x high normal from taking melatonin for 3 years that had 20mg of pyridoxine hydrochloride (the bad b6) I stopped it in January 2021 but the PN did not go away but actually has gotten some worse with feeling like I have tight compression socks half way to knees. I feel so blessed that I have no pain. Daily exercise seems to have prevented any balance issues. I am currently taking The Protocol 525 that John has spoken about. It has many vitamins but no b6. I've only taken it 1 month and plan to stay with it for at least 6 months to see if it helps. On another website some have said the P5P natural form of b6 has helped them. That's why I reached out to you to see if you could tell improvement. I hope you get healed from the sepsis very soon. Thanks again!!
Bonnie

Good morning, Bonnie (@bb0753

Yup, I'm still taking EB-N5, that vitamin combo (or, as they call it, 'medicinal food'), with the P5P B6 you inquired about. I had paused taking it for a month but have now resumed. I had been taking EB-N5 twice daily for a year, but when my supply ran out, and the manufacturer wrote to ask if I wanted a new supply, I decided I would get the advice of my two neurologists. ('Two' neurologists sounds kind of posh. I've ended up with two neurologists purely by accident. One is quite far from home; I had thought to 'drop' him, but both neurologists appear eager to continue working with me; in the end, I decided I'd keep both.)

You may know from other posts I've left that last spring, I came down with a nasty sepsis infection. My particular 'brand' of sepsis, saddling me with a host of sepsis symptoms, also some considerable added balance challenges, challenges in addition to the ones with which my PN had already gifted me.

Up until the sepsis, I hadn't thought EB-N5 had done me any harm (in fact, it may have done me some good; a second EMG showed no progression in my PN). But, because sepsis, along with PN, had made a Mulligan stew of my balance, I couldn't be sure if continuing with EB-N5 was worth it. That's why I sought the advice of my two neurologists––and both recommended continuing. And so I have.

Can I personally endorse EB-N5? Not really. Can I say any bad things about it? No. That's been my experience with PN and the gazillion hoped-for-helpers––pills, ointments, therapies, etc. … you name it––we recognize that we have an incurable disease; nonetheless, we pursue relief––even temporary relief––fingers crossed every step of the way.

My very best to you, Bonnie.

Cheers!
Ray (@ray666)

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.

My new neurologist also tested my B6 level and found it to be very high (toxic level). I have stopped the multivitamin with B6 with a combination of Nortripyline for about 7 weeks and the PN is has remarked improved. I might be one of those people who is particularly sensitive to B6. This is the first time anyone tested the B6. Perhaps if had been tested 8 years ago, my suffering could have been stopped.