Ask HN: HNers with multiple sclerosis, can we get in touch?

That sounds incredibly tough.

My brother has a similar/worse sickness that halves his life expectancy. He's also a programmer. Some quick thoughts from going through the downs with him:

- There's no silver bullet. More sleep, better nutrition, more sports, and less stress make a difference.

- My brother literally left a PhD in treatment optimization using ML at Cambridge because pharmaceutical companies are churning such better treatment so fast that optimization past ones felt irrelevant. The bad news is that most new treatments only stabilize your situation, so you have to stay as healthy as you can until the cure comes. We felt it was better to plan around this, and open the door to be positively surprised, than hope for the moon and get crushed with never ending disappointment.

- There are many ways of earning a living that don't involve programming. Career switches can be daunting when you've lost self confidence, but most jobs require only a fraction of the brain it takes to program.

- If the prospects are very gloomy, consider changing country. We had my brother move country so he could get a medication that's not covered at home and costs >$250k/year. The medication changed his life, and will soon be covered at home too. Having to leave your friends for health reasons suck, but European countries offer such better health coverage that it can be worth it. And it's easier living a happy life when you don't have to worry about unpredictably becoming homeless.

If you move, keep in mind you may need someone to marry you to let you in. I have MS and a Canadian master's degree. Wasn't eligible to stay in the country because my crippled butt costs too much. Most modern countries with universal healthcare have very strict rules about disabled immigrants.

I am considering moving to Canada, do you have a link about this?

Yup! The Government of Canada discusses medical inadmissability [0] on its site. Specifically, those of us with MS are prevented due to "Excessive demand on health or social services". Cases of this have happened: there's a WaPo article from 2017 that includes some examples [1] such as a family being denied immigration due to their child's intellectual disability and spouses of Canadian citizens who are denied permanent residency due to costly disability.

Also worth noting that there are very few things that can offset MA. One is potentially marriage. But again, I'm a qualified Canadian professional who's half Canadian. (2 grandparents on opposite sides/both families are from border regions so I'm not eligible for citizenship that way). Still couldn't stay.

[0] = https://www.canada.ca/en/immigration-refugees-citizenship/se...

[1] = https://www.washingtonpost.com/posteverything/wp/2017/02/03/...

I’m a programmer with MS. Like you, diagnosed about 15 years ago, but still doing pretty well. I feel like I’m starting to notice the gradual decline more and more, despite not having had a serious clinical relapse for about 10 years (some minor ones).

Things 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.

Thank you. May I ask what are you planning for yourself in the future? I've heard that HSCT is not recommended after 40. Are you on any drugs and have they helped?

Also had it for 15 years, I was sharper in my 20s than now but now and I think age and MS have affected that. I realise I'm at my best when not stressed, well rested and happy. However I'm not always in control of those. Stress is easier to deal with as I talk to my employers about my condition and I avoid anything stressful when possible. I still feel useless some days and have bad brain fog and can't think clearly, it gives me a lot of imposter syndrome.

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.

Thank you. I hope you do better, it's heartbreaking how things can change with this.

I do know one success story, so I should share it. A programmer and chemist who moved to my warm, sunny city to die with a severe case of progressive, not RR MS. He had been told he probably only had months to live. His disease has been halted for more than two decades, but much vision and some movement hasn't returned since nerve damage tends to be permanent.

He swears antifungal treatments are the reason, but he also gets a hours of direct sun every day. His fungal beliefs have altered his diet some, but I don't think he's doing anything very unusual there.

That smoking helps re Parkinsons and MS in recent (but not decades old) studies suggests to me that maybe the new smoking rules sending people outside regularly to smoke might have an influence. Melanin is known to be good at killing viruses (etc, etc) so the Epstein-Barr connection might be relevant here.

This is speculation of course (and his speculation varies from mine) but since it's the one case of definite results that have held for decades, I thought I should report it.

It's funny because pretty much the only thing the doctor told me when I got diagnosed was not to smoke.

About the fungal stuff, I'm reminded the common saying (around MS circles at least), that "everybody's MS is different". I'm not sure who much I agree with that, given that we now have solid evidence of a link with EB virus, but it might be that along the chain of factors some people have "fungal infection", others "parasites" (as I've recently heard), etc.

Could you say how long it's been since he moved and where? Several people here are talking about the important of sunlight, and I know that to be true for me, I always feel much better with sun - not vitamin D - sun and sunlight, and I'm seriously thinking about the possibility of a move, even though I have no clue how I would practically achieve it atm.

I’m lucky to have lovely, smart person in my life who lives with MS. Thank you for sharing you story. You are by no means alone in this and your concerns are shared by many others who live with MS. I will send you an email shortly, but for others with similar stories that read this in the future, I high recommend the local groups from the MS Society (https://www.nationalmssociety.org/Resources-Support/Find-Sup...), reaching out to a team member at the Elliot Lewis Center (https://elliotlewisms.com/multiple-sclerosis-care-team/) even if you aren’t a patient along with following their materials on social media which provide Q&A on the latest case information and especially critical during the pandemic when information on MS-specific was limited/unknown, ensuring you are on a best-in-class treatment that meets your needs (which for many people in the US will be Ocrevus, https://www.ocrevus.com/), given the level of impairment you may qualify for state and federal programs in the US so call the SSA at 1-800-772-1213 (https://www.nationalmssociety.org/Living-Well-With-MS/Work-a...) to ensure you know what you need to do to ensure you are always supported financially in your journey, and if you are still physically active, I’d also suggest the free trips for MS patients with First Descents (https://firstdescents.org/programs/programs-application/).

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.

I'm not in the US but I hope your post helps someone, appreciate it.

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.

I have MS and definitely didn't know that the secondary progressive form of the disease was just a matter of time. Now I'm slowly losing the right side of my body after years of being in remission with numbness in my hands being the only symptom. There are definitely medical advances. The one I'm most excited about is nervgen. It's regenerative without the radiation and terribleness of stem cells. But it's only starting phase two trials. Hang in there, it sucks but the doctors reassure me that it's a good time to have MS as thirty years ago there were no treatments. Now there is the walking pill to help nerves conduct and it really works for me. There are also dmts that slow the progression or stop future lesions.

What do you mean by “terribleness of stem cells”?

Stem cell therapy (autologous) involves wiping out your entire immune system and then rebuilding it from scratch using your own stem cells. It uses (usually) strong chemo drugs to do the wiping out, which themselves are toxic and have tons of side effects. You are rendered weak, with a high risk of secondary infection that requires you to basically isolate yourself until your immune system recovers. It’s very unpleasant. Close family member is currently in the midst of it for multiple myeloma, and spent an extra week in the hospital from secondary infection.

Thank you.

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?

Google says "(dalfampridine) Extended Release Tablets, 10 mg, is the first and only brand prescription medicine indicated to help improve walking in adults with multiple sclerosis (MS). This was demonstrated by an increase in walking speed."

Can confirm. It helps me out. It is a potassium channel blocker that somehow improves nerve conduction in the lower body. It has been available at compounding pharmacies for a very loving time. A company took that, made it a time release pill, went through the FDA hoops, and then released it as Ampyra. Like all MS drugs it was super expensive. Now the generic is available. Still expensive, the number I see is something like $1100 a month. My pharmacy told me they bill the insurance company $180 lol.

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.

Sorry to hear that you going through that. Not and MS patient personally, but I've been going to a special clinic in Mexico for more than 10 years and MS is one of the conditions they treat. I've met quite a few MS patients there who achieved life-changing results after doctors in the states and EU had failed to help them.

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.

I'm sorry to sound negative, but what you are saying about this "clinic in Mexico" sounds too good to be true. And everybody knows that when something sounds too good to be true ...

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.

If you know anything about the history of science generally, you know that most genuinely new research results are ignored for decades before being embraced. Simple ego suffices, greed isn't the usual reason for this. I agree that more openness would be good, but as seen here the amount of flak that can result is daunting. MS research over the last century is a particularly gasp-inducing litany of tunnel vision and refusal to try (or acknowledge) more than one narrow research approach at a time.

While I agree with you with my alarm bells, I found out too that our medical system is way more a money extraction machine than an health machine.

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

While I agree with you with my alarm bells, I found out too that our medical system is way more a money extraction machine than an health machine.

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.

Agree with you about the magical mexican clinic sounding a little too good to be true.

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.

Hey, I appreciate both of you; I wouldn't characterize the parent as unethical, he seems like a real person with a story, on the surface I have doubts it could work for me, but I won't rule it out, if only I had the financial means to try. You're not entirely wrong about your assessment, when I first got diagnosed I was quick to believe anything that would promise help, and even followed through with some (pricy and ineffective) treatments like CCSVI procedures (which were even discussed here on HN back in the day).

> but I won't rule it out, if only I had the financial means to try.

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.

I am OP :). I really hope the future isn't so grim, I mean, to be honest it's me rejecting what is the most common outcome for people with MS, slow degradation. It pains me because just 3 years ago I was feeling so good, my brain was working great (due to a mix of circumstances, financial windfall, low stress, and pretty certainly a great mix of diet and exercise), I had so many product ideas and the energy to pursue them. Anyway, I digress... The thing is, as far as I know, no non-esoteric options provide what I'm seeking. As I've replied elsewhere, my initial intention was to collect (even very speculative) hints to future research and treatments that might do what current ones don't: restore, repair.

Could you not do this? Medical vacations are a thing—and for precisely this reason.

> 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.

> I'm sorry to sound negative, but what you are saying about this "clinic in Mexico" sounds too good to be true. And everybody knows that when something sounds too good to be true ... 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’m assuming you aren’t aware of the Dallas Buyers Club.

Dallas Buyers' Club was a thing because of governmental/societal prejudice against HIV/AIDS victims which itself stemmed from Christian bigotry towards gay people

In that case society and government were widely opposed to helping and considered the plague a positive and much-deserved thing. There isn't the same level of stigma around MS.

“toxic mold exposure”

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.

Would love to hear more about the clinic. I’ve heard they can do more treatments than outside the US. All of interest to me since I’ve got a myeloid condition.

Sometimes it's as simple as your chakras being out of alignment.

Sometimes it's more complicated though.

> symptoms like "mild" dementia. Difficulty multitasking, make silly mistakes, mentally tired easily, emotional issues, etc.

I don't have MS (that I know of), but suffered these exact symptoms in a big way due to long covid. Can your thing be due to covid and not MS?

This is fascinating, as I've said for many years I had all but forgotten about the MS, and when I first started having worsening symptoms they seemed to match exactly what some of the worse afflictions of long Covid I had read about.

And then just the other day I read somewhere that some research has found demyelination happening in patients with long Covid.

As for me, I haven't had Covid, and the symptoms are really common cognitive symptoms of MS. I feel sorry for having somewhat dismissed long covid as psychosomatic at times, while it might be for some (even the majority) of cases, I'm fairly certain there is something akin to MS that happens in the brains of some people after they have Covid, maybe it's even triggering something like MS, or MS... hopefully not.

How do you know you haven't had covid? Lots of people were asymptomatic.

I can't be certain, I haven't gotten tested, but the symptoms I've experienced have been gradual, and have tracked with new neurological symptoms of the sort that people with MS usually get (numbness, spasticity, etc.). Could it have been triggered by asymptomatic Covid? I don't know, but there have been enough factors already that were sufficient. Again, this is typical of MS and demyelination.

The latest research suggests that MS is an autoimmune response to the epstein barr virus. Almost everyone carries it but few will develop MS. Like long covid but long epstrin barr. So a very interesting time for research https://www.science.org/content/article/two-decades-soldiers...

I don’t have MS but suffer from autoimmune disease due to low platelets. People have mentioned stress management and I want to echo that with pointing out tools to help. Starting a daily mindfulness practice, even if for 5 minutes, will help greatly. Journaling - wether it’s a gratitude one or simply writing your feelings down - helps too.

I too am a developer with MS. Got my first real flareup when I was 25 years old, I'm 28 now. I'm on ocrelizumab (Ocrevus), which should help prevent new flareups.

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.

Been diagnosed for about 10 years with RRMS.

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.

I miss Tysabri. I was one of the lucky ones who had the 'side effect' of feeling physically great for a week afterwards.

But of course Medicaid won't pay for IV infusion. So nope!

(Throwaway account.)

I also had my first flare-up in years with the pandemic, it was bad enough that, combined with world events, I sort of lost hope and flipped the table.

We moved to a new country in the tropics, a medical tourism destination with good support systems and schools. To be honest, I assumed it would be a place I could more easily afford long-term care and where our savings would go further after I couldn't work anymore - I was in a pretty bad place. I did keep my job remotely after a brief sabbatical, which was great.

It was a dramatic change for all of us, but since the move everything has been... pretty great. I don't know what changed; maybe it's the sun, the change in diet, the new clinic, or maybe (probably) the huge reduction in stress and all of the above. Maybe just random chance. But I'm physically active, I'm more productive than I've been in a decade (my short-term memory is shot and my long-term is fuzzy, but I make a lot of lists and notes), and I'm optimistic for the first time in forever. I had no idea how much stress and fear I was carrying before, not until it started to release.

I'm not saying you should drop everything and move South, but I am saying things _can_ get better. But even if they don't, now is a time you get to make choices about the rest of your life. You may find, as I did, that by choosing your life you also choose to live. We're all just making the most of what we have, some have less and some have more, what defines us is our attitude.

(edit: that sounds a bit overly optimistic as I read it now. I should be clear that I don't have a miracle cure, I haven't fully recovered from my last episode, and I know there are challenges and more degradation on the horizon. I'm just in a much better headspace and environment now, and a lot of that came from taking control of my life.)

Would it be too invasive to ask the country you moved to, from someone with some similar history?

Thank you, I was just making this remark in another reply, that a move to the somewhere with constant sun would be so helpful. I need to take this seriously. Thanks.

As a person with a good friend (computer scientist) who has MS, I wish you the best!

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!

That's good advice, I'm not seeking medical advice, as anyone with a long history with such a disease I'm battle hardened in this area, again, it's been a long time.

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.

MS is a weird disease, it can stabilize for long periods of time and it can suddenly get worse (an "attack"), and then improve, but sometimes not completely. If I were you, given your current problems, I'd check into what your options are as far as disability payments. If you are currently employed does your employer offer long term disability or short term disability? If you are US-based you could apply for social security disability or SSI (if you haven't made enough SS contributions), potentially food stamps and free/reduced cost healthcare depending on your state. All the best.

Try infrared light therapy. (sun, infrared heater or specialized light)

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.

I love red light therapy (I have an combo red/infrared light that I sometimes use), but nothing rivals the sun. I have often thought that if I could move somewhere on the equator I would probably do much better, energy-wise. I don't think it would affect the long-term brain issues I mention much though.

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'm curious about this. Does just being near a space heater work? Isn't all heat infrared light?

Yes - not as intense, but that's not nec bad. Oil filled heaters are an esp reliable, but sunlight has lots of red and infrared, too. Melanin can probably make good use of infrared light to sterilize whatever is passing through your interstitium.

Get enough sleep! It was one of my major problems and remains the constant item to battle with. Without sleep I couldn't even plan to do helpful things for my life, just could manage to "get by".

I just want to recommend https://overcomingms.org/recovery-program/diet

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.

The effect might be due to pushing people towards more beans (soluble fiber.) Interesting recent study shows beans help. If the effect is due to the soluble fiber you want to get beans daily, to keep the bacteria that are helping you, thriving.

It sounds silly to mention, but for a person just in remission, it's hard to identify what helps since progression of the disease is not very visible. Fortunately enough, but it would be good to get on track with a helping diet.

"one million people with MS in the United States in 2022, and in 2020, about 2.8 million people were affected globally"

Is there a reason why the US is affected more?

It doesn’t have to be affected more, just diagnostics in US might be better. People in outer parts of the world might not be getting diagnosed and cared for.

On the other hand, many other places have much more accessible health care with similar or better quality.

Definitely some selection bias in there, but not "the US vs the world".

My impression is that there's a lot of discretion in an MS diagnosis, that it's a set of symptoms with no other identified cause. I.e., it's like a process of elimination.

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.

Lots affected in scandinavia. The doctors claim scandinavian genetics predict higher incidence. But it could be a confounding factor.

And right next door, Canada is #1.

<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>

Yes there is probably a particular virus that’s involved. It is EBV, unfortunately a very common virus that can get reactivated by COVID-19. The picture only got clear this year and there are no great therapies or vaccines yet. In this study from earlier this year, the chance of active military developing MS was 32-times (3,200%) higher for people who had EBV vs those that had other common viruses: https://www.science.org/doi/10.1126/science.abj8222

This is likely measurement bias - a statistical distortion caused by more easily available or better-working diagnostics.

(for the same reasons, some countries want to reduce CoViD testing so it appears there are fewer cases, exploiting this distortion.)

I'm not American, but I doubt I would have gotten MS were it not for terrible diet, stress, lack of sleep, various deficiencies at the time of diagnosis but also during childhood. Also had a very bad bout of mononucleosis when I was 10 (while also being malnourished), so these things can go quite far. So I think my nervous and immune systems were always frail.

So sorry to hear. As of 2022 there is enough evidence for a causal link between EBV (the virus that also is behind mononucleosis) and MS later in life. The hope is that humanity will eventually have strong drugs and maybe a vaccine. Unfortunately, progress has been very slow until now. I hope things will move faster now that people could convincingly argue about this link between a virus and the disease.

Hey tried to send you an email but the recipient's address was rejected because the address does not exist.

Have you read Breath by James Nestor (or the audiobook)? Not sure if that would help, but it couldn't hurt.

I have MS and was diagnosed in 2016. My first relapse was at the end of 2014, during my final semester of graduate school.

My brutally honest answer is that I did three things:

- I'm making some really unwise health decisions in order to meet my current needs. In addition to having MS, I'm the primary breadwinner/sole caretaker for my sister, who has bipolar. I was taking duloxetine for nerve pain and realized it was causing a lot of mental slowness, so I'm going off of it. Likewise, I tried gabapentin and it made me an idiot, which wasn't acceptable. So I just cold knuckle a lot of my pain. I'm also not on any DMDs right now because insurance companies can never allow consistent access. Every time I go on and off my Tecfidera, I go through hot flashes like I'm menopausal and shit to the point where I'm dehydrated for 2-3 weeks. I can't do that 2-3x a year when some paperwork is late because I HAVE to hold down a job/make money. Be ruthless about the trade offs your symptom meds have. (I do love my tizanidine though).

- Used my programming/computer/systems thinking skills to game the hell out of the perverse incentives in our society. I've paid absolutely zilch on my student loans and kept them in constant forbearance since I was diagnosed. I KNOW I'm going to end up with a disability discharge at some point, why would I pay anything? Likewise, I don't save money because I know that when I end up disabled, there are asset limits. So I spend my money on 'fun' things that either last for years (I bought winter coats that will keep me warm for 40+ years, for example) or have resale value that won't be seized. My sister and I switch up how we manage our household financially (and how we present what we do) in order to be a household when it benefits us and not be a household when it doesn't.

- Shopped out my skills to my new social class. Think of it like being a jailhouse lawyer: There are very few people in the lumpenproletariat (to be blunt, that's where disabled people who can't work conventional jobs are) with the skills we have. Or at the lower end of working class society. I'm working retail at the moment and my physical slowness is offset by the fact that a small business with 5 total employees now has somebody with some IT/tech background on staff. They can't justify hiring a whole position to do it, but it's worth putting up with my memory lapses and being a bit slower for some menial tasks (e.g. cleaning) if I can do the 5-10 hours a week of tech work they need and pick up new tasks like receiving easily to cover staff shortages (because again: five people). If you're comfortable going off script/your morals allow it, you can do things like writing papers/doing assignments/helping people game the systems you used to participate in on the downlow. You can earn major bank this way and keep payments untraceable.

The biggest advice I can give to you is to sit down and very thoroughly review your morals and where your lines are. You are right to fear the future - we live in a system with institutions that demand our dependence and vulnerability if we interact with them. Hand-outs and help are only given to the truly destitute (e.g. rent assistance usually requires matters to have progressed to the point where an eviction notice has been served), and the game theory/optimization answer is to use your skills at navigating professional environments to fake destitution. Or to go outside the system altogether.

Hmm, the neurotropic stacks that many of us use in milder form for ADHD etc. that some of HNers use may help.

Specifically you want a very mild MOAI to keep dopamine around longer and that is in fact ginkgo. You want a smaller dose of L-DOPA which is dopamine that crosses the blood brain barrier with dose around 20 mg L-DOPA. Another method if you cannot find the small L-DOPA dose is to take caffeine in a micro dose with macro dose of the weaker Theobromine as then it lasts 12 hours. To do that look for bakers cacao chocolate and take 2 small squares with breakfast.

The other thing you will need is a product that has NFS and BDNFS in it such as the commercial product Neuriva.

Also talk to older programmers as many of us are doing something similar to deal with aging via cognitive changes.

You might research chlorine dioxide.

Look into the company Emcell at emcell.com. They're in Ukraine. Controversial, however they claim that fetal stem cell treatments (used from donated tissue, if that makes a difference to you) - if degeneration of healing systems of the body from MS aren't too far along - will stop MS and regress it, reverse damage/heal/cure it.

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?

I saw your posts about this searching through the archives; I'm not opposed to learning about anything, maybe you have some additional info or context, since you've posted about this several times? Thank you, appreciate your sharing, I'll take a look and see if there's anything to this, at least as an option at some point.

It's likely best to contact them to ask questions for whatever you're wondering about. Their previous website was far better IMHO, as they listed on their pages the actual clinical data/results from their own research - whereas now their website is more shallow marketing.

Hey buddy. I suffer from a remitting/relapsing autoimmune disease called UC that has me urgently sprinting to the toilet 15 to 20 times a day. Sometimes it feels like I’m chained to it, and can only wander so far until the shits strike again. It’s chronic and wears down on my mental health in similar ways. It’s progressive, so one day my colon may need to get replaced with a bag that dangles outside my body so that my natural butthole will be able to go on retirement forever.

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.

A family member went on a diet that helped out considerably. It is grain free, lectin free, and nightshade free. It's a hard diet to follow, but the results have been tremendous.

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

Thank you. I have been experimenting and evolving with diets since shortly after diagnosis. The first year I was symptomatic but it went away pretty dramatically after starting Paleo, I believe because general inflammation went down.

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.

Moving to an entirely plant based diet has made all the difference in the world for me. It isn’t a cure, but excellent nutrition makes a HUGE difference.

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.

Some people cheer for the opposite: that a carnivore diet (or animal product only, but dairy/milk/cheese is bad and highly inflammatory for many) is what essentially cured them of mainly ailments.

So, just to put that balanced perspective to OP.

The conclusion from such dietary changes always seems to be that being more conscious about your food is key. High quality ingredients, no pesticides or enhancers that are meant to make crap taste less crap. Then in the end it doesn't matter whether you go carnivor or vegan or whatnot. Just don't eat everything deep-fried or full of refined sugars.

Well, I fully agree with your first two sentences. Then genetics likely are the next in line for what is healthy, not harmful, for your body.

I forgot about the dairy part - also dairy free.

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.

I thought following AIP was very helpful but I couldn't follow it for more than a year.

[OP here]: It's too late to edit the message but if mods could pick it up (or anyone reading this), my email is actually [email protected] not @protonmail!

OP, don’t worry, ProtonMail routes both email IDs to your inbox by default. You’re good.

oh, great, someone said their email bounced so I thought something had changed with Protonmail

I had my email bounce to protonmail.com but not proton.me and an not the original person.

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?

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

Whatever comments those were, they clearly 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

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.

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?

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.

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.

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.)

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

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 is going to be out there in left field and our experience so far.

1- (will not help you but for the benefit of others) My wife has MS and the doc said if she gets pregnant it may help. She got pregnant and yep sure enough life changing results for the better.

2- Covid vaccine helped her. She felt better after getting both phizer shots. Like her body needed it.

3- She has Been using a machine called truerife for Lyme and says it also helps. She takes a lot of fish oil every day, not the cheap stuff you find at the box store. Lookup nutridyn omega pure.

4- Along with medical professionals find a naturopath. We see one that is semi retired that changed my mind from snake oil to he knows what he’s taking about and saved me from pretty major surgeries twice now.

Curious, did your flareup start after taking any of the Covid shots/boosters? My wife has MS and was doing fine for a long time (many years). She took the booster earlier this year (March?) then started getting dizzy spells, stumbling, etc a few weeks later. Talking with others in her support group, she learned many people experienced the exact same symptoms after taking the booster. Something about swelling in the upper area of her back (brain stem).

Edit: Another symptom that popped-up was muscle soreness along the spine. We did some research and purchased a "TENS unit" that helps very well in relaxing the muscles.

What shot did she take? My mum has MS for… 8 years now? She got diagnosed when she broke her wrist and it didn’t heal and has been on meds ever since. She’s had 2 shots and a booster and is totally fine. She’s 75. She had Pfizer.

Edit: had>has

Pfizer for all 3 shots.

Also, forgot to note, she also has Tinnitus now which did not appear until after taking the booster. Definitely something odd...

Fwiw I got bad tinnitus after contracting covid. I was quite distraught after a week of loud ringing. But it’s been going away and is almost gone about five months later.

yeah, about week of loud ringing for me too. started about 5 days in. then another week of manageable loudness.

I first almost lost hearing, then as it came back over the weeks I got tinnitus, then over 4 months it's gone, back to normal since catching Cov

It’s reassuring to hear stories like this to know it’s possible.

At least I assume it's back to normal. Lots of things changed in my life around the same time, so I don't have perfect reference. But I am happy to report I hear the ringing of my wireless router again.

Damn, I really hope my mum doesn't get worse :(

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.

Yep, and worst of all. Her doctor seems quite hesitant to link (or even recognize) any of these after-affects from the COVID shots to MS. Very frustrating to say the least.

Have you heard of/has your wife tried low dose naltrexone (LDN)? Major disclaimer - I’m not a doctor/this isn’t medical advice, but LDN has been found somewhat helpful for MS (and a lot of autoimmune conditions) - a friend recommended it to me after he benefited from it himself for his autoimmune condition.

LDN is also apparently gaining interest for long covid (https://www.reuters.com/business/healthcare-pharmaceuticals/...).

I wish the best for your wife.

Thanks for the reply. No, I don't believe her doctor has mentioned LDN (yet). I will ask.

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...

Not MS but I had brain fog for a year after having Covid.

I've read somewhere that long Covid presents with demyelination just like MS... I so much forgotten about having MS that at times I wondered if I didn't get covid unknowingly, because they symptoms some people described were so similar to what I'm feeling.

What I have seen work and suggest you try;

-plant based diet (if it had a mother or a face, you avoid it) -no oils -high dose vitamin b1 (500mg capsules, 2 pill twice a day). It is water soluble so what you don’t use won’t harm you, just drink enough water -omega3 (check labdoor for recommendations)

Start with the above, after 4 weeks you could also explore;

-infrared sauna (fantastic detox and for inflammation) -red light therapy (can find devices on amazon) -a functional doctor who can conduct a comprehensive evaluation and see if you could benefit from detoxing from heavy metals for example.

Good luck, I think diet and lifestyle changes including stress reduction will have the biggest impact.