PN from low dose b6

Hi, Mike– I see John has sent the link to the article I mentioned. No, I don't know if the rice for EB-N5 is the same as for Metanx; I must plead total ignorance of Metanx, but I will do some digging. Thanks for mentioning Metanx. Here's wishing you a good Tuesday! –Ray

Hi, Mike

Insanely, perhaps, I see two different neurologists in two different clinics, miles apart. The one neurologist is the one who suggested I try the EB-N5, and who consulted with about my B6 concerns, putting my concerns to rest. Then a few weeks ago, I had a routine follow-up with the other neurologist and, naturally, I brought up the question of B6 and toxicity. She ordered fresh labs.

(By the way, each neurologist knows I see the other; they're friendly colleagues.)

The labs came back showing my B6 as HIGH: 99.4 against a reference range of 3.4–65.2. With the blessing of both doctors, I'm currently doing a six-week "experiment": cutting my daily EB-N5 dosage in half, after which I'll get more labs.

A side note to all this: I'm five months into using EB-N5. Recently, my PN symptoms "seem" to have lessened. Have they? Or is it just wishful thinking? My mentioning this here is the first and only time I've mentioned it. I'm not telling friends, not even my partner, for fear of jinxing a good thing. 😀

Ray

Hi, Ray! Thanks for sharing this info. When my B6 levels were checked in September by LabCorp, the number came back at 10... but there was no reference range that I could find. But my PCP commented that my B6 was actually at a "very good" level. As I mentioned before, just like you I "think" I'm noticing some change since starting the Metanx a month ago... but also like you, I wonder if it could just be wishful thinking on my part. I still have the tingling and numbness.... but it "seems" to be to a lesser degree. (hard to explain) I don't expect this to ever go away completely based on all I have read... but any improvement will be welcomed!
How fortunate you are to be seeing TWO neurologists! My PCP referred me to a neurologist mid-September.... and I have yet to get an appointment, even though I have called numerous times. 🙁 And neurologists in my area are in limited supply. My podiatrist recently did a skin biopsy and she has referred me for an EMG that will be done tomorrow. I see her again in a few weeks to get all the results... and hopefully a diagnosis. The ortho spine doctor who did my surgery has had me try some meds, but they haven't helped. But there has actually been no definitive diagnosis as of yet. Bravo to you for having two separate neurologists to see, as one may catch something the other does not! Best wishes... and I hope you are right about the positive changes from the EB-N5!! 🙂 Mike

There is a discussion on Metanx - but ignore my comments in the discussion because I confess that was ill informed about P5P vs Pyridoxine 🙃 at the time. I still think it pays to be informed and check when using B6.

Metanx - https://connect.mayoclinic.org/discussion/metanx/

Hi, Mike. How I ended up with two neurologists was a bit of a fluke. About three years ago, I realized my balance problems were getting worse. A friend asked if I'd seen a neurologist. I hadn't; my PCP had never suggested I see one––so I asked her, and she referred me. I'll call this fellow Neuro #1. Neuro #1's office was in disarray; on every visit, I'd be scheduled to meet with a different MA. (The front desk told me that these MAs––four in all––either had been let go or had found better jobs. I smile remembering: all four had names beginning with the letter "K": Kim, Karen, Katherine, and Kelly.) Without severing ties with Neuro #1, I begged my PCP for another neurologist, perhaps one with a more holistic approach to treating PN. That's how I ended up connecting with Neuro #2, who practices physiatric medicine. It was Neuro #2 who administered my EMG. And it was that EMG––the results––that led to the first time I'd heard anyone say "peripheral neuropathy." So that's me in a nutshell: a guy with two neurologists and a case of idiopathic axonal sensorimotor PN. I'm a lucky guy, ain't I? 😀 ––Ray

Hi, Ray! Well, I don't know if I'd use the term lucky, but at least you DO have a definite diagnosis of PN. A diagnosis of PN for me will almost be a relief, because in the back of my mind I keep thinking... what if it's MS? OR horrors... ALS? Odds are it is PN that resulted from my spinal stenosis that the laminectomy improved greatly... but this is a leftover. How I would LOVE to have two neurologists. I go for my EMG in the morning. With a little luck, it may be a neurologist who does the test... and if so, I may ask how I can get in to see him/her!! I see that you have issues similar to mine. So far, I don't have a lot of pain .... just numbness and tingling that results in unsteady gait at times. It doesn't stop me from getting out and about to run errands or go for appointments or attend social events. It's an aggravation for me... and I feel for those who have such pain they are unable to walk at all.... or those who have trouble sleeping because of pain. 🙁 Take care! Mike