Ask HN: HNers with multiple sclerosis, can we get in touch?
The MS was so far outside my concerns for all these years that I didn't know about the cognitive effects of MS (though I retrospect I realize I had some milder form of these symptoms all along), but I now understand MS causes brain atrophy and damage irrespective of flare-ups and lesions.
I've tried many things to make it better over this past year especially, but it's getting worse. It's quite evidently different from depression, it feels like I've lost part of my brain, which seems to be what's happening with MS.
I'm posting this in hopes I can get in touch with others with MS that are programmers and are doing well, and have found ways to make this better, or have gone through periods where they felt like this and it improved. I can't imagine living like this with worsening, I don't have any support from family and any savings (lost an enormous amount of life-changing money few years ago), my programming abilities have waned, and if I can't support myself in the future I'm going to end up homeless.
I want to believe I can do something, that there is hope, perhaps medical advances, or anything I could do.
If you want to get in touch my email is mush_room_hn at protonmail.com. (but you could also reply here)
244 comments
[ 3.3 ms ] story [ 241 ms ] threadThings you can try: Changing your drugs - maybe going for something drastic like HSCT.
Being patient and not panicking - if you’re currently having flare ups your symptoms will appear worse than they really are while there’s acute inflammation happening. Don’t forget that. If the flare ups get under control you’ll should see some recovery and improvement.
Not giving up - keep pushing yourself as hard as you can, make sure you’re training whatever’s left of your central nervous capacity. There’s probably still some left. Keep trying to do as much as you can and you’ll get access to it.
I’m not sure whether HSCT is right for me given that it has some pretty big downsides. My latent symptoms are well controlled at the moment and don’t affect my quality of life too much. If I had to manage a thyroid disorder as a result of HSCT I’m not sure that would be an improvement for me.
If you don’t have insurance or it doesn’t want to cover it, you can get a prescription and a compounding pharmacy can make it for you. If they don’t do time release you’ll have to dose every 3 hours or so. It’s a lot less expensive though. Last time I checked it was less than $100 a month.
I will look into nervgen, initial search results say something about spinal cord neurons, is there anything for the brain?
Lastly, I'm not on a DMD, which one are you on, or would you recommend? I didn't understand they slow the brain atrophy part of the disease progress, do all or just some of them do?
Is there a reason why the US is affected more?
Definitely some selection bias in there, but not "the US vs the world".
I don't know much about MS so I can't make any claim really, but it seems like there might be room for those symptoms to be interpreted very differently in other countries with different training and testing protocols.
(for the same reasons, some countries want to reduce CoViD testing so it appears there are fewer cases, exploiting this distortion.)
<rant> When you look at the geographic distribution of MS you would think there might be a pathogen involved. Clearly there are other factors (genetic, environment?) since not everybody gets it, but there is evidence on the map.
Modern DNA techniques should make it possible to search for a culprit but if you don't "believe" that a pathogen is a possibility you will never search for it.</rant>
If we could acknowledge/prove that some of these viruses are dangerous long after initial infection, it might prompt the development of an EBV vaccine. Not sure if Herpes would respond to vaccines. Put it on the list with Human Leukemia/Lymphotropic virus Type 1.
Edit: had>has
Also, forgot to note, she also has Tinnitus now which did not appear until after taking the booster. Definitely something odd...
https://www.google.com/search?q=covid+tinnitus
I have Tinnitus since I was quite young, I used to complain when going into the lounge cos the TV made it worse. Thankfully after having covid and 3 pfizer shots mine hasn't got worse.
LDN is also apparently gaining interest for long covid (https://www.reuters.com/business/healthcare-pharmaceuticals/...).
I wish the best for your wife.
She is trying to do as much as she can w/out getting more meds. For now, she has been managing her stress as best she can as well as going to a physical therapist to help with the dizziness, muscle soreness, etc. The therapy has helped quite a bit, but the issues still persist. We hope these conditions just go down over time...
This family member knows almost immediately if they have accidentally consumed one of these.
Do your research, and if you decide to try this diet, set yourself up mentally for following it very strictly for one month to see what the results might be. You will need to stay away from restaurant and pre-prepared foods
I'm also pretty sure that I'm doing so badly because of the stress I've experienced during the pandemic, really at a level I couldn't imagine, and, having forgotten I have MS, I didn't do nearly enough to counter it and instead used coffee and dairy, two things known to be avoided with MS (by some patients at least, doctors IME don't even mention it).
I would do anything and sacrifice anything if it could remedy the current issue, but it seems it's more related to some longer-term evolution that doesn't respond to these things... We'll see. I've only quit coffee about 2 weeks ago when I definitely noticed my legs going numb after running wasn't because or overexertion... And then I made the connection with my cognitive issues.
Eating entirely plant-based can also be done very very cheaply if you’re careful.
Walking or other gentle exercise is essential - it’s hard. It hurts. But it WILL slow down the progression of the disease. Keep moving!
Do some reading about your legal rights - if you have a diagnosed case of MS in the United States, you have all kinds of ways of protecting yourself from job termination. If your HR department isn’t evil, they should help you here. If they are evil, keep careful records of everything so you can sue the crap out of them if they fail to protect you as the law requires.
Don’t give up! It’s a disease, not an identity. Don’t let it define you or control your thinking.
You’ve got this.
So, just to put that balanced perspective to OP.
The brain fog can sneak up on you. Try to keep a journal of everything you're eating and how you're feeling. It will help you notice issues and track them down.
The whole work from home movement, really helped me, I now work 4/5 days from home and it allows me to easily take a break and make sure I don't get too much stress. Also no stressful commute.
So really the only advice I can give is to try to avoid stress. Which is easier said than done, but things that gave me a lot of stress before MS, hardly generate any now, because when put into context with the first flareup and losing the ability to move the fingers of my left hand, most things seem only minor.
There are a lot of resources in the US, but it’s hard to do it all alone. Unless you know someone who has been through it, it’s hard to navigate so try to get an MS Navigator assigned from the MS Society as well, which is completely free. You can call M-F 9am-7pm ET at 1-800-344-4867.
I hope this helps others living with MS.
Would you mind sharing your wife's experience with Ocrevus? I hear it's available where I live as well, but reflexively searching for side-effects some people don't do well at all with it. But I would like to hear how it benefited her if you will. Thank you.
My wife has relapsing remitting MS and manages it very effectively with this diet.
It’s not easy — cutting out lots of fats - but doing so has a really positive impact: reducing myelin damage, slowing progression and reducing relapses.
I've avoided mentioning this too much in the comments because I didn't want to seem to be advertising this, although for full transparency, I feel that I must. It's just what I feel is the best best... I've also started (very) high-dose vitamin D, so-called "Coimbra protocol", which really needs doctor supervision which I don't currently have but will promptly.
https://www.inverse.com/mind-body/diet-rich-in-beans-legumes...
It's very simple. Avoid foods that cause inflammation and this helps reduce MS flare-ups
Im currently moving somewhere else to get better rest. And my happiness is in progress, I tried anti depressants but I get anxiety and I tried CBT but it didn't work either. I do also swim regularly which helps too but still not enough. Im hoping this move will help. However its gone on for so many years that I think I will seek a professional soon.
Covid and the pandemic definitely affected me, I couldn't walk properly for weeks after recovering from it. I used to do 20min walk every day to recover and just to keep active and get out. My depression got worse (was getting CBT in days before lockdown) but a few friends of mine play regularly online so I got to be social at least and talk about it. To add to this, I also quit my job before lockdown to travel so I was unemployed for a year in pandemic. I remember going to cafes when things partially opened to practise interview questions and did little projects. I finally got a job the next year.
I'm still worried I won't be strong enough to travel one day, my max distance walking is 1.5km, give or take, without a rest, I could go a lot further only a few years ago.
I know MS affects everyone differently and it can be a very hidden condition. My life could of been quite different without it but it could have been worse. Im lucky to have found a job coding and the silver lining of the pandemic is wfh. I see it like you have to play with the cards your dealt and whatever you can change for the better then try to. It's not been an easy road till now but I try and remain hopeful for the future.
I know it must be even harder considering your circumstances and your health. I hope this helps to know your not alone at least.
There is also a drug that can help you walk faster, if your doctor can proscribe. It idd not work for me but I am told for those that it works for it is helpful. Dalfampridine.
The one major observation that I’ve made from all this is the role that stress plays. Reducing stress seems to have a powerful inhibitory effect. Practicing positive self talk (and catching yourself when you say anything negative to yourself) and moving the body with yoga also seems to help. Getting adequate sleep and nutrition is critical. I’m also convinced that being open minded to both Western medicine and Eastern cultural traditions (diet, yoga, Taoism, etc) has played a role in slowing my disease progression.
I'm getting more into the eastern tradition, I think the mind can heal and can cause disease in an of itself. I need to delve deeper into it.
This clinic helped me overcome a toxic mold exposure that was producing autoimmune and neurological issues that various doctors in the states were unable to effectively diagnose or treat. (They were happy to take my money though) A few year later, I was hit by a drunk driver in Nicaragua and doctors in the states told me I was going to need multiple surgeries and need to adjust my expectations for what healing looked like. With help from this clinic, I was able to recover from that with no surgeries and have no residual issues whatsoever.
The important thing here is that you keep a mindset that healing is possible, and keep exploring options until you find what works. Don't get bogged down envisioning worst-case scenarios. Be vigilant of your thoughts and any time you find yourself going into those fear-based scenarios, do a pattern interrupt and replace them with positive thoughts. For me, the visions I used to replace those fears was seeing myself hiking in the mountains with my dog, feeling healthy and strong. A few years into my healing journey, I found myself doing exactly that. Hiking above the treeline on Mt Shasta with my Malinois, feeling strong in my body, with clean mountain air in my lungs. I sat down and wept tears of gratitude.
Keep pressing forward. It gets better.
Sending you an email.
More concretely, are you suggesting that US and European doctors are ignoring science about MS and just take the money? And the Mexican doctors at this clinic somehow magically have a cure which the rest of the world, at least the western world, ignores to ... enrich themselves?
Seriosly, this sounds very dubious. I'd caution the poster to get into fishy recommendations and blindly trust a stranger on the internet based on hope. Especially out of desperation.
And I find it deeply unethical to get the hopes up for somebody so desperate for a solution as the poster is. Their condition and outlook are bad enough, they don't need to be tricked on top of that. One of the huge red flags is the hush-hush "I'll send you a mail" Why this secrecy?
I urge you to either put evidence if your claims on the table or stop posting this kind of thing.
We are chronically deficient in infrared light, it’s killing people, it’s well researched yet there no pill for that: no money, no reach.
https://youtu.be/5YV_iKnzDRg
But that’s exactly what a lot of clinics doing stem cell therapy are doing themselves.
No evidence the therapy works but happy to accept you as a patient as long as you can fork over $100k.
I’m assuming you aren’t aware of the Dallas Buyers Club.
Here is the problem: OP doesn't have the time. In such a situation, even if you have the money, you can afford to try one or two things long term, maybe three if you are lucky. If those turn out to be nonsense, that's it, you're dead or paralyzed or demented. You can't afford some esoteric nonsense in the bush because some stranger on the internet recommended it and a sketchy website pushed it.
It's really sad that dubious actors are making a buck off of desperate patients and that's just as immoral as a dysfunctional health system.
> More concretely, are you suggesting that US and European doctors are ignoring science about MS and just take the money? And the Mexican doctors at this clinic somehow magically have a cure which the rest of the world, at least the western world, ignores to ... enrich themselves?
I guess you’re too young to have experienced having or to have known someone having an ailment that had a wide variety of ways it was understood and treated.
What a disgustingly rude post.
Maybe you don’t have the experience, but emphatically yes, doctors in the US at least WILL take your money without knowing how to alleviate your issues.
Do you not know how copays work? Do you think physicians say, “Oh, sorry this is beyond my expertise. Here’s a refund for your time.”
No. They’re getting paid.
I know it sounds crazy but there’s this phenomenon in life where people have different abilities and knowledge. It has nothing to do with what nation you live in either.
> One of the huge red flags is the hush-hush "I'll send you a mail" Why this secrecy?
Yuck. Like a preteen who can’t handle a private conversation.
However, I can totally see doctors in the US and Europe ignoring or not knowing about the latest treatments for conditions. As I've aged and watched my parents age, We've dealt with several conditions where doctors have no idea and at some point they just think you're making it up. It feels like most doctors are just barely showing up to work mentally. If you don't fall within the dozen or so conditions/treatments they are familiar with they throw their hands up.
Absolutely true in my experience. They just throw various treatments at the wall and hope one sticks (though I find this more true for psychiatry than perhaps other fields of medicine).
I seriously think more people would benefit from a more holistic approach to medicine. I do not mean holistic in like woo-woo essential oils, but rather trying to treat all aliments as piece of a greater puzzle than each disease needing a different doctor per disease which never communicates with one another.
It's rare though that the breakthrough comes via an obscure secret clinic in Mexico though which is only spread via "I'll email you".
Where there's an ick factor, or a safety factor, as with infecting oneself with worms to reduce allergies, the effect is perfectly real. The Mexican clinics are either are either ahead of their time or unsafe; ya just don't know which.
Some of the things that worked best would have sounded too ridiculous for any Mexican clinic to try to sell to anybody. In my position, I think you would have been glad for any new (and safe-ish) ideas to try out, too. I just wasn't interested in paying the fly-by-night clinics, I don't advise that. Openness (not of the wallet but the mind) worked very well for me. Just really, really slowly.
So I'm more of the "don't sit still" and "bring out the ideas," sort. 1/99 odds sounds damn good next to what I went through. So I don't mind people posting ideas here, it's an adult forum. Ish.
The medical system in the US wholly rejects non-pharmacological remedies, primarily because Pharma has a stranglehold on the medical profession, but also because such remedies are not easily reproducible in clinical trials (which are incredibly expensive and have to be funded by someone, ergo, Pharma). That's not to say that homeopathic remedies all work, but the body is an extremely complex system with a great deal of variance from person to person. There are non-pharmacological remedies that have worked for certain people where pharmacological remedies failed, and the results can't always be scientifically explained. There's also a plenty of times that they don't work. And there's plenty of quackery. But to say that the US medical system has monopoly on medical knowledge would be foolish. (One example is that ketamine is slowly becoming accepted as a positive tool in treating certain mental health conditions, whereas for decades you had to go to some "clinic in Mexico" to find a doctor who could prescribe it to you.)
Sometimes it's more complicated though.
Red flag!
This is among the constellation of fake, unlikely, or exaggerated conditions concocted by the alternative medicine industry so that they can sell more sham treatments.
Here's their specific page on MS: https://www.emcell.com/treatments/multiple-skleroze/
There are free documentary video(s): https://stemcellsmovie.com/ or https://www.emcellexperience.com/emcell-videos/ - the 2nd video from the top.
Emcell explains that the stem cells they use, from 7-12 weeks, are safe to inject in everyone, as the cells haven't started to differentiate yet into the unique individual - mainly the immune system hasn't started to develop, and that they are the base 1000+ stem cell types that we all start with.
I'll email you too in case you miss this.
Edit to add: They also have a bunch of testimonial videos, including of doctors of patients they had and couldn't help: https://www.youtube.com/channel/UC7FLNCZlZ7ofwOPeclBr-xA - if that helps build your trust towards what they offer, if they seem genuine or not; it's hard to know with new technologies that aren't mainstream, skepticism is healthy - especially when desperate people can be an easy target to try to extract money from - but then if it is indeed safe as they claim (they've supposedly started doing research on fetal stem cells 35-40 years ago, and have been offering them clinically for 30-35 years now) - then it's a decision that probably lands on the question of risk-benefit analysis, ultimately, what do you have to lose?
For cognitive benefits, try mental math apps.
Edit: Yes, in fact, it is over the counter. Seems GNC, Walgreens, etc has this on the shelf. Thanks for recommending it!
If you know this, then why are you bringing the herb up as a response to somebody explicitly saying they have MS and are desperate for help?
It's like somebody screaming their house is on fire and you recommend trying a bucket of gasoline. And deep in the comments you'd mention "oh by the way, rhe gasoline could make the fire worse, and also, I make money off the gasoline-ordering-links that I sent you"
Please only take medical advice from medical professionals.
See excerpt below:
“Ashwagandha is an herbal remedy often categorized as an adaptogen, and it is sometimes recommended for MS-related fatigue. This compound does stimulate some cells in the immune system, so it poses a theoretical risk in MS.”
https://www.va.gov/WHOLEHEALTHLIBRARY/tools/multiple-scleros...
I completely empathize and totally get why alternative treatments should be investigated.
It’s just a super tricky problem because everyone experiences MS differently and it’s non reversible nature makes it super scary.
I too wish modern medical could better help. So maybe Ashwagandha is it, just please have that conversations with your doctor.
Not just does this bring money into your pockets, on top of that there is no evidence that withania somnifera even helps with any disease.
That herb has seriously helped me with stress.
Here's one study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3573577/
I need to add that to the site.
(Part of your purported honesty would obviously be to inform your readers that ordering through your links will give you cash kickbacks.)
We recently found out that all of our mitochondria in our cells need infrared light to get rid of oxidative stress. Our modern environment is devoid of infrared light: create all sort of inflammation and autoimmune diseases.
I had similar symptoms(peripheral neuropathy, headache), heal myself and my eczema that I had every winter in the last 23 years with a few minutes per day in front of a infrared space heater.e
It’s this doctor that gave me the idea to try it out. https://youtu.be/5YV_iKnzDRg
I also know someone who was dying of IBS in the hospital, at some point he say f*ck it if I am going to die it will be under the sun. He checked out of the hospital, whent to mexico (from Canada) and healed himself without medication.
I think a lot of our modern problems are caused by our environment (vit-d, infrared, and other things.)
I hope people try it out and that it help someone. Check out the videos of Medcram, many research papers have been done on this.
My reasoning was that it emit all infrared even visible red light.
It worked really well for me. Got my eczema under control after a few days at 1h/day.
But from what I saw in the research papers the inflammation is from cellular respiration (affect all the body) and the results of this inflammation can manifest in all kinds of ways.
You can also feel it, it’s soothing, much more than just a more heated room.
I think that we used to have that infrared before with fireplaces in colder climate, but now it’s almost all gone.
I have started a very high dose Vitamin D protocol (Coimbra), 2 weeks ago. I need to find a doctor to supervise it as the dosages are truly immense but it's the only thing available to me ATM that gives me some hope.
I don't think it's an exact redirect if it works at all... I assume it's a masked email address from the name, maybe those are treated differently?
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
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.
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.
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.
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.
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...
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.
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.
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.
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.
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.
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
Yes my comment was intentionally an attempt to derail a dangerous thread, it worked for a bit and I'm glad it did.
I take it you're in contact with physicians that are tracking your condition and its development, and you're not just relying on your judgement about your own mental state? If not, please get in contact with specialists ASAP, do not rely just on HN for medical advice.
Apart from the above, the best I could do is tell you to try to not be too hard on yourself. I know this sounds strange, but try to acknowledge the situation and that those are the symptoms. Work on accepting this as normal, so that it does not stress you out and lead to acceleration of the condition. If necessary find a person to talk to to help you deal with this, and to help you find what life changes to make so that it gets easier for you.
Just hold on. The science is catching up, and eventually it will! Stay strong, and do not give up!
To be honest initially what I was after was some hints on even highly speculative future medical advances. I don't personally know of anything available right now that could, for instance, restore brain volume, heal myelination scars, etc. At this point even "don't worry, I work in AI and within 10 years it will find a cure" would offer a bit of hope I'd take.
One thing that has really helped me is the combination of remote + pair programming. Having an extra mind to work together is amazing. Doing it remote removes the stress of commute, noise/stress from the office, and allows for relaxing breaks where I can even lay down if I want.
Using note taking frequently, small commits, TDD and drawing diagrams continuously while pairing also helps keep my mind in context and picking up the thread after breaks. Whimsical has been a fabulous tool for this.
I've been of Aubagio before, and now I'm on Tysabri. The difference is staggering. Aubagio gave me tons of side-effects like hairloss, indigestion, increased fatigue and general feeling of being sick. And it still was not able to prevent flare-ups and lesions.
With Tysabri I can't identify a single side-effect. In the three years I've been on it I've not had a single flare-up or lesion identified after MRs.
Something I also believe helps me a lot is simply living in a country with healthcare and strong welfare. Knowing that when it eventually comes to not being able to work anymore, I have public disability pension that will cover 63.5% of my current salary until I reach retirement age (where normal retirement takes over). Having this knowledge removes a lot of stress and despair, which I genuinely believe helps keeping the disease under control.
But of course Medicaid won't pay for IV infusion. So nope!
Regarding Whimsical - never heard of it. So for myself and others: https://whimsical.com/flowcharts
> "Whimsical combines whiteboards and docs in an all-in-one collaboration hub."
However, there is additional risk in taking it if you are JC Virus positive.