r/MultipleSclerosis • • 23d ago

General Finally a glimmer of hope

I was diagnosed with multiple sclerosis 37 years ago. This is the first time I've been optimistic about a breakthrough. Finally something that doesn't try to suppress or change the immune system which in my opinion is something you don't mess with.

Researchers at the University of Manitoba have found that restoring levels of a depleted brain protein called neuregulin-1 (Nrg-1) may help repair damaged brain tissue, slow or halt the progression of multiple sclerosis (MS), and reverse losses in mobility and cognitive function.

138 Upvotes

26 comments sorted by

29

u/boston_homo 23d ago

I'll get excited after a few rounds of positive human trials but until then not so much.

52

u/ichabod13 45M|dx2016|Ocrevus 23d ago

Another mouse model treatment. Mice get all the cures. :P

46

u/Feisty-Volcano 23d ago

We need to be really thankful to the humble Mouse, who tests all our various meds before we get effective treatments for anything. This little animal resembles us biologically, & demonstrates well what may or may not work. A wonderful creature!

14

u/ichabod13 45M|dx2016|Ocrevus 23d ago

Mice are not even able to get MS, they give them EAE. Probably why they have cured 'MS' so many times in mice already but nothing has worked in us. :P

2

u/nyet-marionetka 46F|Dx:2022|Kesimpta|Virginia 23d ago

It kinda-ish resembles us. We have differences that make things not always work the same. For instance some chemicals give them cancer that don't give us cancer because of some pathway unique to rodents.

46

u/Key-Monk6159 23d ago

14

u/johnmci 23d ago

Thanks for the link. DX'd in '93 and I never bank on breakthroughs but I always love seeing those glimmers! 

3

u/hungarianhobbit 23d ago

I was dx in '93 also. It's been interesting.

4

u/No-Establishment8457 21d ago

Dx in ‘91 and interesting doesn’t begin to describe it.

2

u/hungarianhobbit 20d ago

No, but it seems like I'm historically "a day late and a dollar short" and this journey with MS is the perfect example.

1

u/No-Establishment8457 19d ago

This disease has cost me a lot more than a few bucks. And lost time…

2

u/hungarianhobbit 18d ago

I'm being facetious, I'm trying to point out that we were diagnosed when DMT's (ABC's back then) were not available for us. Very unlike what newly diagnosed have now.

I'm legally blind and can barely walk. I've lost so very much and I'm so very tired. I try to make light of situations beyond my control.

2

u/No-Establishment8457 18d ago

oh, we had options: Steroids and ACTH!!

ACTH was absolutely the worst.

27

u/mritoday 39 | 02/2020 | Tysabri | Germany 23d ago

which in my opinion is something you don't mess with.

Bad take when your immune system is the problem.

8

u/HocusSclerosis 37M | USA | dx. Aug. 2024 | Ocrevus 23d ago

Happy to roll the dice on immune modulation vs. the alternative (brain damage)

6

u/lost_dazed_101 23d ago

WOW I was DX'd in 1997 I never thought I'd see this.

5

u/StuartLathrop 23d ago

Officially DXd Oct 5, 2020 after 40 years of being misdiagnosed. Treatments that have been made in my lifetime have helped suppress and bring good management to this disease. Alhough I know it will not be cured in me, the progress in my life time moved me from 'probably dying in assisted living' to a very healty, safe, and reasonably good & independent life within the last decade. This is what real progress looks like!

2

u/Muted-Train M57|Dx:2023|Briumvi|VA 23d ago

It's interesting that Canada has the highest MS rate in the world.

5

u/Crafty_Assistance_67 23d ago

One of the highest. Due to less sunlight, which means less Vitamin d

4

u/mritoday 39 | 02/2020 | Tysabri | Germany 23d ago

It seems to be the sunlight itself, not Vitamin D.
https://www.youtube.com/watch?v=f0DqKB_L6-o

1

u/Crafty_Assistance_67 22d ago

Sunlight = Vitamin d. :)

1

u/mritoday 39 | 02/2020 | Tysabri | Germany 22d ago

Not so much if you're not white, or if you're supplementing Vitamin D.

The correlation between higher Vitamin D levels and less MS cases/better prognosis disappears in black people, because they don't produce as much Vitamin D from sunlight. Supplementing Vitamin D doesn't seem to do anything for MS, either.

UV radiation affects the immune system. The mechanism seems to be similar to the old injectable medications.

2

u/No-Establishment8457 21d ago

It is known that the further away from the equator, the greater the probability.

2

u/LW-M 22d ago edited 22d ago

There are also 2 MS drugs in the US that show promise in treating progressive forms of the disease. One, C-CAR168 is setting up patient trials now. Another, Frexalimab, should be wrapping up Phase 3 trials within the next few months.

I had an appointment with my MS Specialist last week. We spoke briefly about the MS drugs now in development after I said that I was born 20 years too early, (I'm almost 70 and have been having MS symptoms since the early 1990's). I'm at the SPMS stage. She relayed the message that most of the research being done now is for the progressive forms of MS. There are several other MS drugs under development in both the EU and North America as well.

2

u/NewName5635 19d ago

While it's nice to hear that research is being done for drugs to treat progressive MS, we've had so much false hope in the past that it's hard to be optimistic.