Whatever comments those were, they obviously aren't at all representative of this thread.
This kind of supercilious putdown often gets upvoted because everybody likes to feel superior, but then it sits at the top of the page (where I saw it), adding off-topic meta noise. Please don't do that.
Yes, there's a long tail of comments on the public internet, but to be on topic on HN, focus instead on things that are interesting.
Fuck sake. Why are you focusing on these supposed terrifying nut jobs supposedly somewhere down there in the thread? That's the Internet. Focus on the person with MS asking for advice.
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.
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.
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.
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.
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.
My dad had MS. He passed away a while back. It's a horrible disease, and I'm in awe of people who live the best lives they can while dealing with it.
Because it is so horrible, and plays out over such a long time, there is an entire industry that preys on people with MS with false hopes, and miracle treatments (electric shock, photonics, bee stings, all kinds of potions and lotions). There's also a lot of research going on trying to get to the cause, find a cure, or slow the diseases progress. It's really hard to know the difference between genuine research, and snake oil.
My Dad was a doctor. An MD, with a BS in chemistry and an a second BS in Biology. He was a scientist first, and a family doctor second. Every time someone came up with a potential cure, he'd drill into it. Most of the time, he'd read all the papers and come back with "this one is a dead end." Occasionally, he'd find something exciting. One in particular was "bee sting therapy". It was about what you think: get stung regularly by bees, and something in the toxin slows/stops the process. Dad fell for it, and after a couple of treatments, he came to the conclusion, "it just hurts." And he stopped the therapy. He never gave up on science, and kept trying to something that worked (he was highly involved with both the MS Society and the MS Foundation).
MS is one of those diseases that really shows the limits of human progress. We know the "what", we have no idea on "how" and "why" (best guess as of now is Epstein-Barr virus, but that has been the best guess off and on for decades). This is despite billions and billions of dollars in research.
Don't give up hope, and don't lose touch with reality.
Isn't there a large genetic component to the condition too? I thought it was predominately found in people of Northwestern European decent. I guess, it would be a perfect cocktail with EB virus + the right genes?
I have MS, PPMS (10-15%) no relapses and mildly progressing. Not a bad situation now, but no one knows the rate of progression.
My doctors tell me no genetic component and the Northwester EU is likely from lack of vitamin D. The closer you are to the poles the more likely you are to get it.
The "perfect cocktail" theory is the current thinking around EBV but, it was current thinking 20 years ago and fell out of favor. This is why dealing with MS has been so hard. We don't know what actually causes the condition.
MS is more common the further from the equator you are. That applies to Northwestern Europeans. This does not apply to descendants who move closer to the equator. In short, the link between ethnicity and MS is not well understood at all. The only genetic factor that seems to be well understood is that MS is more than 2x more common in women than men.
This 1000x. You won't believe how much I want to upvote you.
I feel so sorry for OP to have asked. It will be so hard for them to find the answers that are actually helpful and ignore every that's nonsense or actively harmful. They are desperate and likely don't have the energy to fight all this.
Hey, I appreciate your intent, I feel I can sort through this fine after so many years with this. It's funny because my initial intent was collecting some speculation about _future_ medical advances (even just "AI will solve this in 10 years, trust me, I'm working on it!"), just so, to be very blunt, I can convince myself that it's worth living if in the future I can be made whole again.
It's true that newly diagnosed people might be more vulnerable to such things, I mean, I was and have pursued speculative things out of despair, so it's a fair warning to them.
Yes please keep up the hope. As I mentioned in a deep thread below, the causal link between EBV and MS only got established in 2022 so there is hope that in 10 years time you will live through major medical advances. (I would not be able to disclose if I worked on it, but I am nearly certain that many other people work on it.)
You have to live I note present. We all die. MS just makes you fear for the future. Best advice I have is use a PMT (if your doctor agrees) and slow the progression so advances in medicine can cats up. Exercise, good diet, controlled blood pressure and cholesterol are important.
Few die form MS, but it makes you weaker to other conditions, so maintaining good health is key.
Be present and understand that there are many in far worse situations than yourself. For my condition there is one DMT (as I have PPMS) called Ocrevus, and there are trials for other drugs. Time will tell what works well, but hope springs eternal.
Once last point: it is diagnosed by Venn diagram: the inter station of MRI lesions, mobility issues, spinal fluid bands. It is a circumstantial conclusion: we are in the early days of understanding this condition. Just remember that life is terminal and enjoy every day to its fullest.
That covid boosters could trigger an exacerbation is utterly unsuprising. You're right to think that doesn't nec show that disease progression is worse.
However I do wish you wouldn't claim knowledge that new approaches don't work. Probably they don't - but that's why we do the experiments, you know.
Made mine worse, but it definitely didn't cause it. Then again, Covid would have probably made it worse, perhaps worse than the vaccine, too. Thankfully do not have MS, so I cannot comment on that part.
This kind of supercilious putdown often gets upvoted because everybody likes to feel superior, but then it sits at the top of the page (where I saw it), adding off-topic meta noise. Please don't do that.
Yes, there's a long tail of comments on the public internet, but to be on topic on HN, focus instead on things that are interesting.
https://news.ycombinator.com/newsguidelines.html