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Likelihood that the pain will progress or stop?
Neuropathy | Last Active: Mar 15 7:14pm | Replies (29)Comment receiving replies
Hi Steve, you didn't answer dlydailyhope's question: "Have you had extensive blood work to determine if you have any deficiency or toxicity of vitamins/minerals?" This is one of my questions.
I have been living with peripheral neuropathy for 14 years. At the time my D3 levels were critically low, around 9. I have it tested each year now and my D levels only stay in the normal range if I take about 7,000iu daily.
I developed sensory and autonomic neuropathies 10 years ago after an episode of Guallain Barre Syndrome, and things have been getting progressively worse. I recently learned about how the deficiency or toxicity of vitamins/minerals can exacerbate neuropathy symptoms and, in some cases, cause it. Deficiencies in B1, B6, B12, and D3 are a part of this picture, as well as the toxicity of too much B6.
I recently discovered I am deficient in a form of vitamin E that can cause PN symptoms and have B6 toxicity. I stopped taking B Complex a few years ago when I learned about B6 toxicity, yet my multivitamin contained it. I stopped the multivitamin in mid-December and started on the correct form of vitamin E, and my symptoms are lessening. Any of these nutritional deficiencies or excesses can cause neuropathy issues. There are probably more, but these are what I am familiar with.
Taking medical grade third-party analyzed supplements is important, as well as knowing exactly what you need. Other supplements that help with neuropathy are NAC, 5-HTP, Co-Q10, R-ALA, magnesium glycinate, to name a few.
I am also wondering if you have removed the foods that aggravate nerves from your diet, mainly gluten, dairy, brown rice, sugar, and caffeine. If I consume any of these, my nervous system suffers, and my symptoms flare up.
Replies to "Hi Steve, you didn't answer dlydailyhope's question: "Have you had extensive blood work to determine if..."
Hi inmagic,
I have presented to my GP with pain and lethargy symptoms for 5 years. So many tests - all "normal". My doctor eventually said, "We have tried everything - it has to be sleep or diet". So I bought a 'wearable' and monitored myself for a year. All "normal". Sadly this Doctor moved.
My symptoms progressed to fluctuations in my eyesight. I mentioned my hot feet to a friend who sent me an article about the escalation in cases of vit B6 toxicity (in Australia). I began reading, researching and comparing data (I am a retired research analyst).
I was surprised that B6 toxicity had been on the TDA (Therapeutic Drugs Administration) radar for some years. The former safe daily dose of vit B6 (in Australia) has been reduced from 100mg a day to 10mg. Yet supermarket and chemists (drugstores) have bottles of supplements containing 100mg on their shelves.
Medical papers are showing concern that many people presenting with peripheral neuropathy are being treated with B6, when that is the cause.
I started taking magnesium (at the recommendation of my doctor) 5 years ago. My supplement contained 25mg of vit B6 - which I took daily. (I weigh about 55-56kg)
I have an annual blood-screen (which I keep and document). Everything 'normal', every year; yet these lethargy and sensitivity issues kept getting worse. So after my friend sent me this article (Dec 2024) I added B6 to my Jan 2025 blood screen.
Everything, as before, boringly normal EXCEPT B6. In our testing the normal range is 35-110 and mine was 1607. The young doctor was very calm about it. "Its reversible. Just stop taking it and you should be fine in about 6 months". After stopping I experienced the most awful mood swings (like I had one nerve left and everyone was getting on it!) and increased ataxia (loss of balance, coordination, dropping things, not hitting the right key on the keyboard!)
As many here know at the start of detox the symptoms get much worse.
I am taking Vit B12 100mcg, Vit D 25mcg, Alpha-lipoic acid 300mg and Acetyl-L-carnitine 500mg. The increase in confusion and short term memory loss is increasing anxiety (that is exhausting). I'm also trying to address the nocturnal leg cramps that started this whole cycle (I am taking 110mg magnesium chelate in the evening as magnesium is circadian). My goal is to do no harm - ie not add to the problem. I've never had an issue with gluten but I've never been friends with dairy. I don't eat much but I consider I eat well (that is very subjective).
I am interested in the role of Vit E and Co-Q10. I have noticed sugar after noon (one of my weaknesses) exacerbates the situation, as does an evening glass of wine (just one!) which I used to find calming. It all seems very joyless right now.
Happy for any advice and happy to share whatever I learn along the way. I often think 'step back' and 'less is more' is good self-advice.
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Hi inmagic, sorry for not answering that part… yes, I’ve had endless blood tests, spinal taps, emg’s, mri’s, ct scans, etc. and everything is in the green.
Then I went to a rheumatologist, who did even more exotic blood & urine tests.
No deficiencies or red flags ever showed.
I’ve tried several supplements (and anti-depressants) for 30 or 60 days, one at a time to have a clean test… no change.
I have not, and probably will not remove those things from my diet (although I have cut down a lot on sugar and bread), because honestly… without SOME pleasure, what’s the point of life?
There’s nothing but exquisite pain, 24/7… I’m gonna have pizza and ice cream with too much hot fudge if I want it.