[Broken_Hippo]

Welcome to the world of auto-immune diseases - or heck, the world of chronic incurable disease.

Everyone wants something that'll help, and it feels like controlling something that might make you feel better is better than doing nothing.

With MS in particular (knowledge because of my own MS): A few folks haven't been entirely truthful about their treatment story. Combined with the fact that MS affects folks very differently (I got diagnosed around 40 and it is generally mild so far and I'm lazy) and the most common form has "relapses" that are usually followed by a varying amount of recovery and remission, it makes a lot of sham cures look very promising.

The only thing that has been clinically proven to slow down disease progression - and therefore, keeping some quality of life - are modern medicines, which are unfortunately expensive.

I mean, of course you are going to be better off if you eat a generally healthy diet and move about when you can (difficult for some with MS), you are going to be better off. It isn't a cure, and if the supplements were, they'd be medicine and insurances/governments would pay for those instead of the pharmacy meds.

[Nomentatus]

As of two years ago modern medicines reduced exacerbations but did nothing to slow the progress disease, as you claim. If there are new and opposite findings, I haven't seen them.

In chronic inflammatory diseases generally, treating yourself well often or usually has the paradoxical effect that your body now has more resources to attack you with, more viciously; whether re autoinflammation or autoimmune reactions. It cannot be assumed that being good to yourself will make you less miserable - although you will probably live longer.

Re other things that help, smoking has now been shown to help, but earlier studies before people who smoked were pushed outside to do that showed the reverse.

It's true that everyone with MS has a different straw to cling to, but those who swear by modern medicines without deep-diving into the empirical research are amongst this group, not contra. The history of dollar driven MS research and treatment is decades long and a rolling tragedy, economically and otherwise.

A recent study has shown beans help. (Perhaps because soluble fiber is necessary for choline absorption?) But whether that study will hold up I know not.

https://www.inverse.com/mind-body/diet-rich-in-beans-legumes...

[Broken_Hippo]

As of two years ago modern medicines reduced exacerbations but did nothing to slow the progress disease, as you claim. If there are new and opposite findings, I haven't seen them.

Fewer exacerbations means fewer lesions: While your disease might progress, it doesn't do it at the same rate as it did before medications - or heck, even when comparing to the first medications. For most folks, this is exactly the same as no disease progress. It definitely means that our outlook is better.

In chronic inflammatory diseases generally, treating yourself well often or usually has the paradoxical effect that your body now has more resources to attack you with, more viciously; whether re autoinflammation or autoimmune reactions. It cannot be assumed that being good to yourself will make you less miserable - although you will probably live longer.

From what I can tell, being active before you have damage generally means it it a little easier to get some function back. Right now, the general advice is to stay as generally healthy as you can, within reason.

Re other things that help, smoking has now been shown to help, but earlier studies before people who smoked were pushed outside to do that showed the reverse.

You are going to have to back this up: Everything I've read states that smoking - the act of inhaling smoke that has been lit - is detrimental and actually a risk factor. MJ helps some folks feel a bit better, but they recommend things like edibles or vaping over smoking a lit joint/cig.

but those who swear by modern medicines without deep-diving into the empirical research are amongst this group I can swear by modern medicines because people smarter than I am have done the research, something I cannot say about a book written by someone not educated in medicine, nor about supplements that aren't studied.

he history of dollar driven MS research and treatment is decades long and a rolling tragedy, economically and otherwise.

And this can easily be seen with alternative medicines (diet, supplements, etc) and isn't special to any other major or common disease.

A recent study has shown beans help. (Perhaps because soluble fiber is necessary for choline absorption?) But whether that study will hold up I know not. And if it pans out, health insurance companies and governments that run single-payer health plans would back up paying for nutritional education and possibly give folks beans, which are cheap. Taxpayers would demand things like this.

[Nomentatus]

A lot of gainsaying here.

https://pubmed.ncbi.nlm.nih.gov/ is where to go see that modern drugs genuinely don't alter progression. I know this is surprising. Your experience is better your outlook, alas, is not. The amount of nerve damage over time visible on MRI is not lessened. Note that by far the majority of function loss from exacerbations is usually from pressure due to local inflamation sites that blow up; they press adjacent areas hard enough to cause them to go offline, but not enough to kill cells.

Re being active etc - I think we agree here, but I can try to be clearer, and say you'll be more miserable because your underlying health is better. I don't advise people to harm themselves to limit immune reactions; but that is a risk if you, say, "feel better when you overexercise" and don't realize that you are causing your innate immune system (or adaptive in the case of autoimmune diseases) to downregulate because you are creating obstacles for your body, or actively harming it.

Re smoking the most recent studies are trending your way.

https://pubmed.ncbi.nlm.nih.gov/?term=Ms+smoking

The study I read seems to have been an error burst, as it were. I'll edit out mentions of it elsewhere.

There are many other sad medical research stories, as you say, but that of MS is unrelenting and so same same it really stands out as a money-sink and narrow-minded insanity.

My many decades tell me that beans won't have big multinational companies shelling out influence dollars in Congress and Parliment on the side of beans, but I hope your optimism wins that point.