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Suzetrigine - a novel drug for pain

Chronic Pain | Last Active: 1 day ago | Replies (258)

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@jbthompson

"my neuropathy is going to be with me for life and it’s gonna get progressively worse."
Not necessarily!
It's a tenet of faith amongst neurologists that "You can't heal nerves! To the extent neurons are damaged, they're done: you can't heal that. You might stop further damage if the problem is something chronic, but you can't heal damage already done."
BS!!
Absolute BS! Ask your Neurologist: "Transplants! What about transplants? Surely if we don't reconnect the nerves from the organ to the body, you'd lose the organ." Hell, we've even seen neurosurgeons give patients who lost a limb, a donor arm from a cadaver! We did it a couple years ago in Toronto, and it wasn't a first world-wide. Patient lost their arm below the elbow in an industrial accident. Two years on & they aren't shuffling cards but they do have feeling & motion, and it's still improving.

I sustained substantial peripheral neuropathy (PN) from a metabolic problem, insulin resistance (think of it as a kind of Diabetes type 2). Solution: stop chronic damage with diet (went on an extreme Keto diet), used a couple of supplements to treat neuronal inflammation (tried everything but only 2 work). It takes many, many months: years. I've identified a bunch of hacks that help. But it DOES work. Worked a charm for me - SLOWLY.

My Neurologist insisted on adding Gapabentin, then when I said 'enough' he switched it to Pregabalin. I don't think it helps at all, will be ditching it.

Since reversing it substantially (though not all) I was diagnosed with cancer. Chemo causes PN - same symptoms, on steroids! - but the mechanism is different. Still, same treatment effected pretty substantial recovery. Then months of Tamoxifen followed: you guessed it, more PN. Again different mechanism but same symptoms. And while I've been switched from Tamoxifen to an aromatase inhibitor, the PN remains a problem.

I should note: just as I've indicated PN can be caused by different medical problems using different mechanisms, it can be caused by lots of other stuff. Heavy metals poisoning, pesticides, herbicides, industrial solvents, viruses (incl. the 'flu & COVID-19), injury (incl. concussions), etc. Some MDs who have heard B12 can help have theorized from this that B12 insufficiency causes it (boy, that's criminally lame reasoning), and B12 &/or B1 can help a little, maybe, but I sincerely doubt it's a common cause.

The most common cause - & certainly mine - appears to be metabolic. We've simply not evolved to live forever on a high-carb diet. We can do it - humans are famously adaptive - but there's fall-out for some people. Not all, but a sizeable percentage of the public.

If that's you, then it all starts with dietary change. If your cause is something different, you'd want to identify what so you can stop it, then see if you can treat the damage. Of course, not everything is likely treatable, but I'd maintain most things are. Hurts nothing to try, right?

Hang in there. Respond to this Comment if you want to know the two supplements: not a secret but they DO each require a hack to work, & this is already a pretty long response. Hang in, heal your nerves, then DO NOT NEGLECT to rub your neurologist's nose (politely) in it: ensure they understand YOU could find a cure - at worst, a treatment - even if they could not. I risked pissing off my neurologist. Did do that, a bit, but got lucky: he's a decent man, more concerned with patient welfare than his damaged ego (he's a find!).

The Neurologist that told me 10 years ago "A doctor's worst nightmare is a patient with Google" has been following my recovery for more than a decade. 8 years ago he started requesting periodic MRIs & whole day-long sessions of cognitive testing, I think to document & correlate changes in imaging (if any) with changes in cognition as tested. Then 2 years ago told me he thought I was onto something: "Don't stop." Like I hadn't noticed. Told me since that he's changed his treatment program at one of Canada's leading teaching hospitals: "Everyone goes on your protocol." Not that he expects it to cure everyone - "Or even anyone." But he was interested to see who it helps. Two years later he's still following his patients, still advocating this treatment approach. He's impatient, but he knows healing nerves takes time. So published studies - all of which are shorter in duration than a few months, not many years - will never show treatment success. They're much too impatient.

I'm grateful to my neurologist: for his character, his willingness to listen (somewhat), follow my success & admit it (wow). He wasn't much help, but he's tried; there just hasn't been much in his kit bag that works 'till now. But he's earned my respect.

Such doctors DO exist. Keep looking for one. And don't stop self-advocating, demanding better care. The supplements & diet you can try on your own, you don't need their assistance (no prescription required). If your problem isn't metabolic but something else, they may still help. The mechanism in most cases is cascading inflammation, in neurons, in the brain & down your nerves. It's all nerve tissue. So the solution is 1) figure out the likely cause (so you can stop it), then 2) address inflammation in neurons. That absolutely IS possible.

A neurologist's assertions that "you can't heal nerves" is just plain wrong, total BS. Ask a neurosurgeon.
Hang in there. I realize it's frustrating. Outlive the bastards, prove them wrong!

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Replies to ""my neuropathy is going to be with me for life and it’s gonna get progressively worse."..."

Please tell me what the 2 supplements are that can help PN. I developed AIDP as a complication of covid. It is so painful.