Multiple Sclerosis

https://subfictional.com/multiple-sclerosis/

by luu • 4 months ago

63 34 4 months ago

subfictional.com

functionmouse• 4 months ago

Dead URL

d-us-vb• 4 months ago

Worked for me.

ChrisMarshallNY• 4 months ago

Hugged to death.

MS sucks. There’s varying degrees, though. I know folks that have it now, and ones that died from it.

Some of the treatments aren’t very nice. I knew one chap that was on Interferon, for life.

ser13• 4 months ago

Archive link: https://web.archive.org/web/20260120080248/https://subfictio...

prplfsh• 4 months ago

https://www.astrazeneca.com/what-science-can-do/topics/next-...

AstraZeneca is doing some really interesting research in this area - cell therapies that reset the immune system to eliminate the dysfunctional cells driving autoimmune disease, and then allow a healthy immune system to rebuild (for diseases like lupus, rheumatoid arthritis, and multiple sclerosis).

konschubert• 4 months ago

Today, there is also AHSCT.

There are already clinics where they basically remove your immune system and give you a new one. If you don’t die in the process, you are likely to be cured of MS.

(Any existing damage will remain.)

Currently this is reserved for the most quickly progressing cases but if we can make this safer and cheaper, it might in future be applied as an early stage cure, so people can go on to live healthy lives.

That being said, Astra Zenecas approach does seem much safer, if it’s proven to be effective!

JoshTriplett• 4 months ago

There are already clinics where they basically remove your immune system and give you a new one. If you don’t die in the process

Of side effects of the process, or of opportunistic diseases during the transition?

SmellTheGlove7• 4 months ago

Yeah AHSCT is no joke. I mentioned in another comment my wife has MS - diagnosed last year in her mid 40s with thankfully no severe impairment. They discussed AHSCT with us but didn’t recommend it unless another disease modifying treatment didn’t work. Thankfully, Tysabri seems to be working well for her.

My mom passed from leukemia years ago. Or rather, from an infection as she was starting HSCT. I’m sure it’s safer than it was 30 years ago, but being without an immune system for a period of time really is still a last resort.

johnisgood• 4 months ago

I would not mind remyelination + being on a DMT, heh.

mjlee2• 4 months ago

Anokion (now bankrupt) also seemed to have some progress along these lines (link below).

A close family member suffers from MS and is on the more effective but less safe drugs available. They haven’t suffered a relapse since starting them four years ago, but they have been hospitalised twice as a result of side effects.

As we learn more about the relationship between the immune system and various seemingly unrelated diseases the research and understanding has massively increased over the last few years. I’m cautiously optimistic that better treatments aren’t far away. An ancestor was lobotomised for hysteria in the 1960s, before being diagnosed with MS.

https://clinicaltrials.gov/study/NCT04602390

SmellTheGlove7• 4 months ago

Which drug are they on, if you're okay sharing?

SmellTheGlove7• 4 months ago

It would be amazing if this type of treatment worked out. MS in particular seems to be a race between technology and your immune system. You hope the next cutting edge treatment is ready by the time the current state of the art stops working for you.

caycep• 4 months ago

not my primary field, but I will say, though, from the folks we see in our clinic, nowadays w/ ocrevus/kesimpta/rituxan, patients are way more stable and dealing with way less side effects than 10-15 years ago.

maxall4• 4 months ago

I was part of a team researching MS at a university a while ago. It truly is an endlessly fascinating disease. Most evidence currently points to MS being caused by a combination of Epstein-Barr infection and genetic factors [0,1]. It is hypothesized that Epstein-Barr triggers autoimmunity which results in the prototypical demyelination [2].

[0] https://www.science.org/doi/10.1126/science.abj8222

[1] https://www.pnas.org/doi/10.1073/pnas.2424986122

[2] https://www.nature.com/articles/s41586-022-04432-7

DANmode• 4 months ago

Demyelination needs more attention in the general populace.

Thanks very much for posting.

freezystem• 4 months ago

https://neurosciencenews.com/gut-immune-responses-ms-trigger... A landmark study from Keio University (published March 2026 in Science Immunology) has identified a key mechanism linking the gut to MS. This opens the door to new MS treatments targeting the gut itself — such as modifying gut bacteria or blocking the abnormal antigen-presenting activity of IECs — rather than broadly suppressing the immune system

moralestapia2• 4 months ago

First, a request: We do not wish to receive treatment or management advice for MS, including anything related to diet or lifestyle.

This, please. People tend to think that publishing a blog is some sort of "social" activity, a two-way conversation, a way to build/keep a small community. It is not, as a reader you're just expected to consume the content and move on; I hate when people overstep that boundary, jeez.

How you can help
We will continue to need your support.
I’m sure we’re going to need help with things here and there. Running errands, taking care of things around the house, etc.
Gift cards have been suggested as one way folks can lend a hand

Hey, this is great! Thank you for being very clear on what your needs are, that makes is so much easier to just reach out and help in a way that it wouldn't bother you. As you say gift cards are great because you don't even have to interact with the person sending it (COVID reasons), we can just send it to you, you receive it, if you're busy you don't even have to reply right away.

We will communicate those requests as needed.

Thank you for the trust you put in us. I will remain pending of this, I can't wait to help.

mathgladiator• 4 months ago

It is not, as a reader you're just expected to consume the content and move on; I hate when people overstep that boundary, jeez.

That is not the normal boundary.

debesyla• 4 months ago

Why publish on the web, if it's strictly personal and you don't wish to hear responses?

I can understand "I don't need advice, duck you" worldview, but strict "you only consume, never think or respond" is a bit weird...

Of course, our comments here are a bit meta on this topic.

Note: after re-reading I may have just misunderstood sarcasm, lol. Oopsie. Ah well.

moralestapia2• 4 months ago

;)

Finbarr• 4 months ago

MS treatments tend to take 3 forms:

- immune reset (sledgehammer that can “cure” diseases like MS but with many side effects and potential complications)

- immune suppression (super effective but with increased risk of infections and blunts vaccines)

- immune redirection (less effective but doesn’t mess up your immune system so badly).

It’s only in the last ~10 years that super effective treatments that can stop ~99% of lesion progression have existed- Ocrevus and Kesimpta. These are anti CD20 disease modifying therapies that destroy all your B cells. The memoir of Dr. Stephen Hauser- “The Face Laughs While The Brain Cries”- provides a fascinating insight into the development of these treatments over the last ~40 years of his career.

There are active trials of newer types of treatment and a lot of progress is being made in the MS space. It used to be a “death sentence” disease but is quite manageable for many sufferers now. It’s different for every individual and I wish the blog author good health.

jlukic• 4 months ago

I’ve been on Tysabri for 3 years. I think anyone looking at this problem should just at the network meta analysis of outcomes from DMTs. You can think through each options risk profile, and then make a reasonable choice for your preferences. consensus.app is a good starting place for evaluating the research quickly.

if anyone needs to discuss i’d also be happy to share my experiences if you reach out.

ninju• 4 months ago

should add [2021] to title (old article)

raylad• 4 months ago

N-acetylglucosamine actually is effective against MS.

Article: https://www.ucihealth.org/about-us/news/2023/09/multiple-scl...

Paper: "N-acetylglucosamine inhibits inflammation and neurodegeneration markers in multiple sclerosis: a mechanistic trial"

https://pubmed.ncbi.nlm.nih.gov/37705084/

It is available fairly inexpensively as a supplement.

adamredwoods• 4 months ago

A family member recently died from this. It was gut-wrenching to watch the fast decay of life happen, once full of life, then death, with three years. I donated to find a cure.

Multiple Sclerosis

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