mush_room

Believe me I've went through the entire spectrum of diets. When I first got diagnosed, the diets you would find after digging in a bit where "low-fat", and also dairy-free. I didn't stay low-fat for long, such a diet is extremely hard to stick to, and very though energy wise but also taste-wise. Going from a typical student diet of pizza and various things of the sort, to this, would have been very though.

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.

Good advice. I'm going to start LDN soon. I tried it briefly years ago but didn't feel I needed it that much at the time and I was already taking many other things.

Thank you, all good advice.

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)

I just remembered that I've also seen B1 megadosing used for MS, with good research. Didn't know about the link with myelin. I took it regularly for certain periods but can't say it made a huge difference, altough research says it does, but it's hard to say and I don't think I was doing it correctly, it looks like it has to be spread out throughout the day.

I just reread your comment and wanted to wish you prompt success on your consulting search. And consider putting an email address in your profile so that you may be contacted should your community idea materializes.

All the best

Thank you.

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

Someone posted a Discourse invite link here, I suggest you (and others) add their email addresses in their profiles so that we have a possibility to follow up on this idea.

I would like that to be not so but my understanding is that MS is a continuous process from the start, and that the relapsing/progressive distinction is mainly a factor of its effects relative to age.

I understand it might not be relevant for MS, but could you share what worked?

I like your attitude, I mean, specifically that you are so resourceful. I think this kind of thing can bring it out of people. I wish you all the best, friend.

And thank you.

I'm sending you an email, but just want to mention I had a period in 2019 where I felt exactly as you describe. But then, things happened.

I'm putting my faith in the idea that reducing "leaky gut" is the key, along with eliminating allergens like dairy. I was doing pretty well all these years mostly avoiding coffee, dairy, and other things that increase leaky gut like MCT oil. My worst symptoms happened recently as I did all these things. The diet I'm on is meat-based, or, more illustratively, fiber-free. From my understanding fiber can often be actually harmful for leaky gut.

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 would also like to know...

Thank you, I love Gabor Maté, I mean I'm sort of attached to him for being such a kind person, and I love hear him talk. I didn't know his book also touches on MS. Just got the audiobook, thanks!

I thought HSCT could halt the disease entirely, but I'm not sure... It's the silent progression of the disease that worries me.

Yeah, I can relate to your symptoms as well...

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...

Thank you very much. That seems rough. For whatever it's worth, I need to share this, as I had stumbled upon this person who recovered from UC with a meat-only diet: https://www.youtube.com/watch?v=JX7LzKEMTpU.

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 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.

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.

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.

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

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 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.

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.

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.

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.

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.

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?

[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 mush_room_hn@proton.me not @protonmail!

Oh man, I don't know how I messed that up, it's mush_room_hn at proton.me not protonmail!