32 ms·

This thread is terrifying. No, covid boosters don’t cause MS. No, there isn’t a magical Mexican clinic that fixes everything. No, light isn’t going to cure y

by jddil 4y ago

This thread is terrifying. No, covid boosters don’t cause MS. No, there isn’t a magical Mexican clinic that fixes everything. No, light isn’t going to cure you. Please stop giving out dangerous health info and stick to which JS framework is better HN

pjdkoch 4y ago
sooyoo 4y ago
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.
- mush_room 4y ago
  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.
  - pama 4y ago
    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.)
  - alexmanuel27 4y ago
    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.
Broken_Hippo 4y ago
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 4y ago
  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-study https://www.inverse.com/mind-body/diet-rich-in-beans-legumes...
indymike 4y ago
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.
- hirvi74 4y ago
  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?
  - indymike 4y ago
    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.
theteapot 4y ago
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.
hda111 4y ago
It’s not wrong that vaccine can cause autoimmune diseases. It’s just extremely rare and the benefits outweigh the cost almost any time.
- hirvi74 4y ago
  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.
lol_hackerz 4y ago
[flagged]
ekianjo 4y ago
[flagged]
Nomentatus 4y ago
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.
dang 4y ago
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. https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html
- jddil 4y ago
  Giving out dangerous medical advice was on topic for the thread? Yes my comment was intentionally an attempt to derail a dangerous thread, it worked for a bit and I'm glad it did.
  - lol_hackerz 4y ago
- lol_hn2 4y ago
- nextaccountic 4y ago
  Maybe you should address the concern by removing dangerous medical info?
- relaunched 4y ago
  dang ftw - again
dennis_jeeves1 4y ago
You sir, have an upholder-of-the-truth complex.

by jddil 4y ago

pjdkoch 4y ago

sooyoo 4y ago

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.

mush_room 4y ago
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.
- pama 4y ago
  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.)
- alexmanuel27 4y ago
  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.

Broken_Hippo 4y ago

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 4y ago
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-study https://www.inverse.com/mind-body/diet-rich-in-beans-legumes...

indymike 4y ago

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.

hirvi74 4y ago
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?
- indymike 4y ago
  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.

theteapot 4y ago

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.

hda111 4y ago

It’s not wrong that vaccine can cause autoimmune diseases. It’s just extremely rare and the benefits outweigh the cost almost any time.

hirvi74 4y ago
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.

lol_hackerz 4y ago

[flagged]

ekianjo 4y ago

[flagged]

Nomentatus 4y ago

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.

dang 4y ago

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. https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html

jddil 4y ago
Giving out dangerous medical advice was on topic for the thread? Yes my comment was intentionally an attempt to derail a dangerous thread, it worked for a bit and I'm glad it did.
- lol_hackerz 4y ago
lol_hn2 4y ago
nextaccountic 4y ago
Maybe you should address the concern by removing dangerous medical info?
relaunched 4y ago
dang ftw - again

dennis_jeeves1 4y ago

You sir, have an upholder-of-the-truth complex.