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DiscussionLiving with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Replies to "Hi Ray--Good to hear from you! I really got a kick out of learning that you..."
Steve,
I wish I’d kept my last reply to the medical and not so much the personal, but I got so charged when I heard you and I had several overlaps – Denver and LA, the newspaper business, and running – that I lost control. So, I’ll try to keep this post to the medical. You had asked about supplements …
… and I mentioned briefly and only in closing that I’ve been using a prescription-only supplement called EB-N5. First, though, to backtrack: I have idiopathic large-fiber, sensory-dominant polyneuropathy. For me, that means lots of balance problems (worse on some days and at certain hours of even my “good” days), but no pain (for which I’ll be forever grateful). My neuropathy was diagnosed via my first EMG in August 2022, although, as I reflect back, I’d been having worsening balance problems going back possibly as much as ten years. Once I received my diagnosis, I began auditioning specialists (as so many of us with neuropathy do) until I met a fellow I really liked; I’ll call him “Dr. B.”
Dr. B, besides being a neurologist, was also a physiatrist whose focus was physical rehabilitation: less emphasis on drugs and more on physical therapy. I liked that, as that was what I was looking for at the time: a doctor who’d take more of a holistic approach and was less interested in giving me yet two or three more prescription-only medications. Several months into working with Dr. B, he surprised me by asking if I’d like to try a “medicinal food,” EB-N5. Having accepted that my neuropathy was incurable, my attitude was, “What the hell? Why not?”
I started taking EB-N5 in July 2023: two hefty capsules in the a.m., and two more hefty capsules in the p.m. I mentioned EB-N5 here at the Connect forum, and discovered right away that – at least in many people’s minds – supplements like EB-N5 were “controversial,” because they contain a substantial measure of Vitamin B6. It’s known (so my reading has shown me) that B6 in excess can either bring on neuropathy-like symptoms or exacerbate existing symptoms.
This alarmed me, and so I talked with Dr. B. It was Dr. B who explained (and was seconded by others here at Connect) that B6 comes in two distinct varieties: B6 pyridoxine hydrochloride, which, in excess, can have a toxic effect (the B6 found in most OTC supplements), and B6 pyridoxal phosphate, or P-5-P, which has not been shown to have a toxic effect.
So, I’ve been using EB-N5 for more than 15 months. I’m asked: Has it helped? To which I answer: I can’t be sure. I don’t think it’s hurt me. But helped? The only evidence I have is that EB-N5 may have helped in a second EMG, administered by Dr. B, a year after that first EMG, that showed my neuropathy had not progressed. I plan to continue with EB-N5 until I have more definitive information (helping or hurting) or until Dr. B says to stop.
Phew! I got kinda long-winded. I’d better stop. At least, however, I kept this medical. That was my plan.
Have a great day, Steve. I promise the next time I write, I’ll keep it to under a usable 500 words.
Ray
Hello again, Steve (@chawk)
The parallelism goes on, if occasionally in reverse. I was Bronx born and bred, but after a stint in the Army, I quit my job as a junior reporter with the Bergen Co. Record in Hackensack, NJ, and relocated to Colorado (a decision the worth of which I still question). The year was– and now I'm about to reveal myself as an Old Codger –1970. I'd given up thoughts of journalism and had decided instead to pursue advanced degrees in theatre. Sad to say, I profited not a penny from my advanced degrees; however, I did have a ball acting on Denver's seemingly countless blackbox stages. Them thar were the ol' good days!
And thanks to a decent share of generous reviews, I, too, still remember her as the "late, great Rocky Mountain News."
If my mind's not getting foggy, watching Frank Shorter win the gold in the '72 Olympic got me hooked on running – along with 20 gazillion others worldwide. As I recall, my first "good" shoes were Asics. I had them with me when I moved to LA. I ran many a happy mile in, up, and around Griffith Park in those Asics. The smog got to me after a while. I'd already made plans to return to Colorado when I saw the Runner's World advertisement for the coming spring's United Bank Marathon. I now had a date to train towards! Let me lace up my Asics …
My podiatrist, John McGarry, is an ultra-marathoner. He's regularly run Leadville's 100-mile ultra-marathon. When he told me about running a 100-mile marathon, I decided not to try to impress him with tales of my recent Sloan's Lake 10K.
I've used a number of supplements on and off over the years, none with any reportable success. The only supplement I've stuck with – because both my neuropathist and my 100-miler podiatrist are enthusiasts – is a medical food called EB-N5. You'll find quite a few mentions of EB-N5 on Connect, many of those mentions made by me.
A short training run in the a.m.? I'll meet you in front of the City & County Building.
Cheers!
Ray (@ray666)