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.

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.

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.

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.

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 guessing MS is still going to be inadmissable because our meds cost ~100k/year (or more depending on the med). We're expensive.

Plus side, "spouse" is explicitly listed as an exception, so I guess it's somewhat less disgusting now that they're at least not using disability as the reason to keep people's spouses and children from reuniting with their family in Canada.

Nothing near my number, which is encouraging. My numbers are clearly somewhat out of date. But I do wonder where that extra 40k+ cost (depending on currency values) in the US comes from.

That is why it is more expensive in the US. The patient rarely pays for it, so the insurance companies make it comically expensive and then the insurance pays for it up to a deductable and then the MANUFACTURER pays the copay for you. It's really, really stupid incentives.

Literally with Tecfidera I would burn through my annual deductible so fast that I didn't have to pay for any other medical procedures after the first three months of a year. But out of pocket it was free because of these incentive plans. It was freaking dimethyl furmarate, and I'll grant them manufacturing and formulary costs, and trial costs, but clearly there's more than just that going on.

But yes, Ocrevus and Kesimpta (both are monoclonal antibodies that reduce B-cells, and leave you immunosupressed -- I got 5 covid vaccine boosters, two rounds of monoclonal antibodies to boost my immune system, and still got COVID last month) are as far as I am aware the state of the art for drugs.

Personally I think the idea of somehow treating an underlying EB infection while also doing other treatments is the most actually encouraging news I heard out of MS research since Ocrevus.

In any case, FWIW I did more research on that site and it does actually list "spouse" as excluded. Since other people may also have rather panicked after hearing about this I have copied it below wholesale.

---------

Excessive demand cost threshold

2022 cost threshold (under the temporary public policy)

$120,285 over 5 years (or $24,057 per year)

This is an amount that we use to decide if the cost of your condition places an excessive demand on Canada’s health and social services.

In June 2018, the Government of Canada announced changes to the excessive demand policy. Under the new policy, the cost threshold amount is increased. The new amount is now three times the Canadian average cost for health and social services. We’ll update this amount every year, based on the latest Canadian average.

Exceptions

Medical inadmissibility rules for excessive demand reasons don’t apply to:

* refugees and their dependants

* protected persons

* certain people being sponsored by their family, such as dependant children, spouses and common-law partners

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?

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.

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.

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.

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.

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.

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.

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.)

I’m assuming you aren’t aware of the Dallas Buyers Club.

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.

Sometimes it's more complicated though.

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.

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 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.

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.

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.

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.

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

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.

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.)

I was dx when I was 27, I’m 35 now. Though looking back I think I had it at least since puberty.

Right before the pandemic I was in a similar spot w my health. It’s rough. I would say I was roughly at EDSS 3-4, and I could feel myself slipping further. I won’t list my symptoms. Physical limitations were starting. Mental limitations where huge. And so much pain.

The pandemic was hard but brought me amazing gifts.

I’ve been off any medication (ocrevus) 3 years now. I feel 20 years younger. I’m on fire mentally physically emotionally spiritually sexually. I feel like the luckiest person alive. But I also think what worked for me will work for others.

It’s not all puppies and rainbows.

It takes work. It’s not for the feint of heart. It’s no guarantee.

I’m happy to share w folks. But I will not discuss it further on HN.

Feel free to reach out:

seanjezewski at protonmail dot com

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.

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?

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.

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.

I've known him for maybe fifteen years, and he's in better shape now than ever.

He swears antifungal treatments are the reason, but he also gets several 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.

Re sun: melanin is known to be good at killing viruses (etc, etc) so the Epstein-Barr connection might be relevant here. We've learned revolutionary things about melanin in the last two decades, which hasn't reached clinical practice at all. Such a delay is par for the course.

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.

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.

He moved at least twenty years ago, to a sunny but more northern west coast city and has remained here since. (I wasn't being as clear as I thought. I've now edited my post, thanks!)

It's reasonable to suppose that some environmental factors might be involved, but vary. After all, Epstein-Barr is at best a necessary condition for MS, it's very far from sufficient. Logically it can't be the whole story or nearly everyone would have MS.

The coast is useful because the sun is kinder, more filtered. Even if UVB turns out to be necessary, which I don't know of course, it's nice not to worry too much about the time of day you're out. It might be worth noting that a century ago when sun therapy was in vogue, they recommended the three hours after sunrise, only. But they also put resorts in mountains, esp in Europe, to get a longer season of effective full spectrum light.

Sure, but I think some people are just more susceptible to certain things. I think it would more likely that everyone with <insert right genetic lottery> who gets EB will more than likely develop MS.

A majority of people that smoke tobacco will not develop lung cancer, but a majority of people that have lung cancer smoked tobacco.

That said, I've also read that heat can make MS symptoms worse. I anecdotally get a bit weird in the heat. So, I thought maybe I'd stick to colder, cloudier places. But maybe that's wrong, and I should get a sunny, not-so-hot place. Maybe that only leaves California, or I can stop wearing coats in winter to get some rays at a low temperature :)

Could that explain the higher incidence among females too? Do males spend more time outdoors?

Do you mean melatonin?

But yup, I meant melanin, the more recent outpouring of research there is amazing. Melatonin is an amazing antioxidant, just amazing, and as a hormone it initiates processes that fight illness at night, including pathogens, but I don't know of it having any direct action against pathogens.

For those who don't know, PD often has associated cognitive effects. I now search for the right word, and lose my train of thought frequently. Nonetheless I think my programming skills are so far not obviously affected, though I go through periods where it is more difficult than it used to be to concentrate and keep everything in my head necessary to finish a task in a reasonable time period.

I'm lucky in that I do not have a noticeable resting tremor that would be a dead giveaway. Also remote interviews don't involve people noticing my awkward posture or difficulty getting out of a chair. I believe so far I "pass" as far as seeming obviously disabled, although my age is apparent both visually and if you examine my resume carefully.

I would love to join a support group of people struggling with these sorts of problems. As we all know on this forum, the tech world fetishizes youth and 'potential', and tends to undervalue experience and hard-won deep knowledge.

I suggest you open the idea to basically anyone in high tech who is experiencing significant challenges due to disease or even just advancing age. Maybe a discourse channel? Or some other format. I'm sure some of us would be willing to allocate a few hours a week to set up and manage a forum. It would be great to share stories, tips & tricks, health advice and so on, knowing that it would be shared with others who are facing similar struggles.

All the best

I used to have a very sharp memory and attention to detail. Today I can't even remember the last conversation I had with my wife and I constantly skip words and letters. I also have significant word-finding difficulty (mostly in speech).

There are two things I've done to help remedy this which may be of use to you: 1) learn something new and challenging on a quarterly basis like an instrument or wood-working and 2) Adderall. Go get evaluated for ADHD, because it can easily co-exist with the MS undetected. It's worth looking into I think.

See e.g. here:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6392124/

That's why I think people should just try megadosing B1 for a while as it is not toxic and to get a datapoint if their troubles can be related to a deficiency somewhere. Many people get instant relief of their problems just after a single dose but the effect might get weaker as the supplementation continues. However, it's a good hint for their physician where to look at.

I really hope you can find a way a diagnosis and a way to recover. I don't know much about the criteria, I suppose you also don't have sensory/motor symptoms.

I think amphetamines are a bad gamble with neurological disease, as the extra strain on the brain is worsening the inflammation...

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.

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.

I've noticed a bunch of little things, over the years, that are probably MS related - and a few more after a big relapse: Foot drags every so often, mental math that was easy - isn't, forgetting things, fatigue.

My advice is to take a breath and make a plan. I've started to realize that the retire at 65 plan might not be possible - so, I'm planning for a scenario where maybe I can't work in the same capacity, at 55.

There's a lot that one could be depressed about - so, it's important not to get stuck in those thoughts. Happy to chat offline or it seems like a discord channel (for the group) might be in order.

I'm JC Virus negative and taking Tysabri. So far, so good. It's had very good results in studies, but you have to stay JC negative

Could you say if Tysabri improved any of these symptoms and your age?

MS sucks.

Things I have found helpful for me, ymmv: cando-ms Ocrevus Ampyra Eliminate processed foods, eat lots of fruits/veggies Exercise the parts of the body that can still move John Kabat -Zinn, mindfulness meditation for pain management Sleep Get outdoors a few minutes every day Participate in clinical trials Meet with others fighting MS who still hold on to hope, and can still laugh and cry

Things I believe that may not be true EBV virus/mononucleosis plays a significant role in my MS Still unknown, but there is interesting science on this. I tried to qualify for a study on ATA188, which kills EBV infected immune cells, but did not qualify.

I wish you well.

I'm surprised with how many people get diagnosed so late. Is it failure with the medical system or were your symptoms very subtle until then?

Lastly, what treatment are you on and how has it helped? (If you can have a before / after distinction)

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?

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.

They have responded very well to monthly infusions of Natalizumab (Tysabri)

We are lucky to have some of the best doctors in the world for this: https://www.nslhd.health.nsw.gov.au/Services/Pages/ms-rnsh.a...

Autoimmune protocol diet was a big help to stop flares. LDN helps a ton to get nerve pain under control.

Blood thinners brought back my cognitive function as I was having tons of mini strokes .

Vit d,b12,e, fish oil. Magnisium have all improved quality of life

Cut all carbs and all seed oils and see how you feel.

I then discovered Paleo, and then Paleo "AIP" (autoimmune Paleo). It made a tremendous difference. I followed it quite closely over the years, with moments of stumbling with various "compatible on paper" foods but not really in spirit. I was mostly symptom-free during that period wrt. to overt symptoms (I still experienced depressive states, but that I would also attribute to tweaking of the diet). Over the years I started forgetting I had to deal with this and started having chocolate, various non-gluten grains, coffee, etc., to sort of self-medicate the mental issues I was having. That didn't suit me well. Not even the coconut oil, which I later learned about why.

Then a few years ago I discovered carnivore/zerocarb. But I wasn’t consistent for long and added fruit etc. Also there was a learning curve. Frankly my best period was when I was eating mostly raw ground beef and was very strict no-dairy / no-coffee / no-carbs. Subsequently as soon as I started adding even fruit, first of all I started binging on it when my emotional state was getting worse because of the lack of ketosis, and later when I had forgotten how it even felt to feel good I started with chocolate, coffee, later MCT oil, etc.

As I state elsewhere here I've recently gone back on it, mostly by cutting all of the above foods. It's just evident my gut is super sensitive, and I swear i can feel it. To be clear, when I had the period where I felt really good, the feeling I felt was emanating from my gut. I thought it had something to do with gut biome (which it probably did), but moreso I think it's because it fixes "leaky gut" (I know, it's "alternative" but there is research on this).

Anyway, thank you for suggesting it. I've avoided going into this too much in comments because it's always quite controversial, but it's what I'm putting my faith in, from experience. I actually like veggies, would love a salad sometimes… I would like to have some, but they do seem to be non-optimal for some with very sensitive guts.

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.

And thank you.

I wanted to give some advice as someone else who has to go it alone. I'm guessing that you're either from poverty/a lower class background like I am OR that you have an abusive family controlling resources (like my mother's family). Making it as a disabled person looks very different depending on whether or not you have a safety net/professional network/etc.

Another thing to keep an eye on since you mentioned being a bit blindsided by the cognitive effects is emotional effects. I can still program, but my ability to emotionally regulate has gone way down and I'm very emotionally labile in a way I wasn't before. Which means I can't exist well in a professional environment because white-collar work means you have to mind your Ps and Qs, hide your impoverished background (always be careful about what you say), etc. Which I can't do. Everybody in retail/service work is traumatized, so they'll overlook a random crying session or a rant with a few f-bombs a lot easier.

This thread is heavy on health advice, which is great, and I'm seeing some good tips here. I trust this forum more than many general health forums! But I'm curious if you could elaborate more on your work struggles. I worry that , as a programmer, my brain is everything, and if that goes, I'm done. Do you think your employer has noticed a drop in your performance? Have you been objectively failing at necessary projects? Have you had to take a pay cut after being laid off elsewhere? Have you had to take time off of work? This is not (entirely) me challenging your sense of worry, but also wondering how bad the symptoms can get.

I have also felt a "lobotomy" or "mild dementia" state at times, but given my very early stage, I think it was partially burnout or mid-life crisis. Working a job for 5 years, staring at a screen in the same room every day, realizing your life isn't as moldable as when you were younger, it can make you feel weird! That is, there are many causes for a drop in attention and focus, and it's probably a combo of MS and other things. You said in a reply that 3 years ago, your "brain was working great", because of low stress, good finances etc. So, even if your MS is objectively getting worse, make sure to keep those other factors in mind, or you might think the MS is worsening faster than it is.

I have found it difficult to read about MS because the symptoms aren't quantified like "X% of people feel this Y years after onset", it's usually just said that Y CAN happen. I've maybe seen stats about complete mobility loss. But for mental impairment it's hard to measure and report. Maybe there's degradation in memory, but how much can I expect?

People tell me "oh, those things, that's just getting older", but sometimes it feels too fast. One thing that seems more objective is how often I just use a completely different word than the one I intended. This can obviously break my code, but because they're so random, it tends to break loudly and early, and I hope maybe linters/tests/compilation can save me from these simple mistakes.

I think forgetfulness would be the biggest hindrance to coding. Forgetting to check inputs, forgetting to unwind a temporary hack, forgetting to warn people about things. But, one can take copious notes, keep checklists, write lots of to-do/revisit-this comments in code. And of course some tools provide more safety nets than others. So, we can try and "engineer" our way out of some things, and it's a good thing even the sharpest airplane pilots don't solely rely on their brains.

I've also started independent consulting recently, spreading work between multiple clients, and maybe that format could be useful to others. While it's less stable in a way, I fret less about the drama/consequences of temporarily scaling back my hours if things get too stressful. A shorter engagement doesn't trigger stigma of inability to focus, and some time off probably won't trigger questions about resume gaps. By having clearer expectations up front about me not looking to lead teams or be some keystone member, I don't worry as much about possibly letting people down. It may also let me experiment more with companies/setups that work for me. Being in the USA, I'm also feeling good about having bought my own health insurance. Yes, it costs money, but people expect you to charge more for it, and now I don't find myself listing "health insurance would be a mess to deal with" as a reason not to leave a job. I'll be less eager to jump at a job that's not a good fit for me, just because I want insurance.

Lastly, and this is for whoever, having some portion of remote work could be good. It's good for when you need to rest, but it's also good for diagnosing yourself a bit. If you're anxious about contentious face-to-face meetings, or office social pressures, it can be hard to know what is causing certain feelings. I could more easily confirm that something was off about me once I removed the stress of the office. I could say "I feel good, I feel calm, with low stress, and I still feel weird". In the office, a sudden strange feeling, noticed at the wrong time, could be interpreted by me as some kind of panic state, which feeds on itself. Now that I understand my body a bit more, I'd feel more comfortable going back into the office, because I can just ignore some feelings as routine. Getting back in the office may be a useful distraction/exercise for people who otherwise are feeling dull or dwelling on their state at home.

I also have some thoughts about how I'll keep perspective, but I'll DM you with those, as that's more touchy, and my post is already quite long. But overall, I think even a programmer with some mental degradation can offer a lot to society and business. There must be so many projects in the world that would be grateful for a bit of your attention and skill, even if they're less popular or less lucrative projects.

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

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.

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.

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.

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.

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.

Separately, ongoing physical therapy is a must for me.

-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.