New to neuropathy without pain

Hi, Steve (@stallen)

I should have heard of metabolic syndrome before (and I probably had, but like so many things, it must have just zipped by). You and John (@johnbishop) have given me lots to read up on. Tomorrow, my weekly no-Internet day, I was planning on starting Zadie Smith's new novel, but now it looks like I'll be reading up on metabolic syndrome. 🙂

To answer your questions, Steve, my PCP found my blood pressure to be on the "high side," but not alarmingly so, and that diagnosis was 20-30 years ago; I have been taking a script medication for blood pressure ever since, but most days now the cuff tells me I'm a textbook "norm" (120/80). To the best of my knowledge, my cholesterol is fine (I can't recall my PCP ever saying it's not); I'm 99% off of all refined sugars (I quit cold turkey in 1976 when I read William Dufty's "Sugar Blues"); and my waist is "about right" (in my opinion): a little bulgier than it was in my running days, but nothing that would put a strain on my car's seatbelt (I'm 6'0" and weight 160-164 lbs.).

I'm not discounting the possibility (the jury's out until I read all the studies you've sent), but it doesn't sound like a good candidate for metabolic syndrome right now.

Ray (@ray666)

Hi Ray…I stumbled across a study looking at people with idiopathic axonal poly neuropathy. In a nut shell, the study was looking at the relationship between metabolic syndrome and neuropathy. Metabolic syndrome in layman’s terms is having high blood pressure, high blood sugar , high cholesterol and large waist size ( typically at least three of these). The study showed a higher incidence of neuropathy with people who have metabolic syndrome…and particularly those with high blood pressure…the theory being the high bp causes micro vascular damage…which damages the axons. I’m curious if you have metabolic syndrome…particularly high blood pressure. ( I fall into that category). It may be a hint as to what’s caused the neuropathy.
Steve

I'm not Ray but I have the idiopathic neuropathy with large fiber damage showing on EMG and nerve conduction but no pain and so far my activity is not greatly affected even though i am 70.. I don't have high BP Large waist or blood sugar issues. My BP RUN 120/80 pretty much always. Weigh 120 and physically very active. I started getting foot neuropathy about 10 years ago that progressed slowly. The only thing that showed up in all the test was b6 at a level 5 times upper limit. This was caused by melatonin which had added b6 and Emergc whichbi took for about 3 years until thevtest was run. The neuropathy continued to progress even after getting my b6 to normal but seems to have stabilized to just my feet and ankles. B6 toxicity is known to cause neuropathy and I don't know if the damage is permanent or not. Hope you find answers

@bb0753, my B6 levels remain high despite assurances from two neurologists' offices I've nothing to be concerned about. Two lab tests, two months apart, both showed high: 114.1 on 10/18 and 72.6 on 12/28. The top of the normal range is 65.2. The lowering by 41.5 in two months was attributed to being advised to halve my daily intake of EB-N5, the medicinal food containing, among other nutrients, B6––but the strain of B6 that (I'd told) does not lead to toxicity (pyridoxal phosphate), unlike the strain that does (pyridoxine hydrochloride). No one has yet stopped me from also taking a daily multivitamin and a B-Complex tab, both of which contain the "bad" strain of B6. I'd like to know how much of my present B6 overload is the "good" B6 and how much is the "bad"? Although I've asked, no one so far has been able to tell me. I've another meeting with one of my neurologists in two weeks and I'm going to ask again, a bit more insistent this time. –Ray (@ray666)

Continuing from my previous post: I see from two supplements (that I've been taking for years, Complete Multivitamin and B-Complex I'm receiving 647% of my B6 RDA. Add to that now my EB-N5, which adds 70 mg per cap to my daily B6 onboarding loading, no wonder my B6 level remains high. This returns me to my earlier question: How much of that high level of B6 is due to pyridoxine hydrochloride (the bad kind), and how much to pyridoxal phosphate (the good kind)? That's the question to which I badly want an answer. –Ray )@ray666)

@bb0753, my B6 levels remain high despite assurances from two neurologists' offices I've nothing to be concerned about. Two lab tests, two months apart, both showed high: 114.1 on 10/18 and 72.6 on 12/28. The top of the normal range is 65.2. The lowering by 41.5 in two months was attributed to being advised to halve my daily intake of EB-N5, the medicinal food containing, among other nutrients, B6––but the strain of B6 that (I'd told) does not lead to toxicity (pyridoxal phosphate), unlike the strain that does (pyridoxine hydrochloride). No one has yet stopped me from also taking a daily multivitamin and a B-Complex tab, both of which contain the "bad" strain of B6. I'd like to know how much of my present B6 overload is the "good" B6 and how much is the "bad"? Although I've asked, no one so far has been able to tell me. I've another meeting with one of my neurologists in two weeks and I'm going to ask again, a bit more insistent this time. –Ray (@ray666)

My dumb question - Is it as easy as stopping the one you have been taking for years and get another blood test to see where you are?

Yes Ray this b6 thing is quite frustrating. Hope you get answers. I find various articles about b6 toxicity. If it were me I wouldn't take anything with the bad b6 as you mentioned are in the multivitamin . I'm not sure about the p5p. This article was just posted in Auatralia. https://www.mja.com.au/journal/2023/218/7/neurotoxic-risks-over-counter-vitamin-supplements?fbclid=IwAR3fe3Lj3AK-wfl7BWOngY_fkHcLzOAnfU-6nPd1b6K39ppnhjANXcvUG3o

@josef3, good morning. No, I don't have pain, just this balance iffiness and a weird way of walking (thanks to the iffiness). I remember a few years back when I'd be meeting some new doctor or clinician for the first time and telling him or her that I had no pain. They'd give me the most curious look like I MUST have pain, at least SOME. But no, I'd have to insist, NO pain. Have I gotten any help? Well, yes, but not "help" in the form of a cure (I accept that there is none); but various management techniques (like checking to be sure my B vitamins are up to snuff) so as to slow or prevent any worsening of my symptoms (balance and gait). I'm a great believer in being an advocate for your own health. As I read somewhere recently, of folks with chronic conditions, 20% simply give up and fall into despair; 60% let their doctors do all the prescribing, never asking them how, why, or what for; and the remaining 20% are advocates, always asking how, why, and what for, studying up on their condition, and getting as much exercise as their condition will allow (staying in motion). I wish you all the best! Stay in touch. Keep posting. –Ray (@ray666)

I have had a normal EMG. I consider myself fortunate that I don't have what I perceive to be pain. But I will say that sleeping through the night is getting more difficult because I'm more aware of the odd sensations that are uncomfortable.
It's interesting how you say balance "iffiness". I understand this. Once I get into a stride I forget about the discomfort but initially I'm very tentative in my steps.