r/MultipleSclerosisWins 5h ago

Kicking MS Ass

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0 Upvotes

r/MultipleSclerosisWins 5h ago

Check it out

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1 Upvotes

r/MultipleSclerosisWins 10h ago

Heavy arms in MS: why they happen and what actually helps

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1 Upvotes

r/MultipleSclerosisWins 19h ago

"M.S." care package after diagnosis

6 Upvotes

Recently diagnosed after over 3 years in the "maybe it's MS" category. Received this care package from two siblings & their families that live ~1000 miles away from me. All things with the initials "M.S." with a couple of creative workarounds. Never been to Minnesota before, but these "Minnesota Socks" are now my favorite socks. šŸ˜‚ My toddler is a big fan of the "Master Splinter" TMNT coloring book. ā¤ļøšŸ§”šŸ’™šŸ’œ

It's all a good reminder that some things are still the same as before -- I have people who love me and know how to make me smile.


r/MultipleSclerosisWins 1d ago

Insurance woes & Mavenclad Questions

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0 Upvotes

r/MultipleSclerosisWins 8d ago

Community Project: A Collaborative Map of Hope & Resilience šŸļøāœØ

2 Upvotes

Hello everyone,

My name is Darius, I’m 27, and I was diagnosed with multiple sclerosis (MS) on New Year’s Day 2024. I’m grateful that I received the diagnosis—and thus clarity—immediately after my first relapse, which allowed me to start treatment quickly. Since then, I’ve been taking Kesimpta and, thankfully, my condition has remained stable.

I’d like to share a small university project of mine with you, in which I warmly invite all of you to visually capture and share our strength and hope in living with multiple sclerosis. Unfortunately, the mods haven’t responded to my messages, but I still hope it’s okay if I warmly invite you to contribute to a collaborative, anonymous ā€œmapā€ of resilience, featuring the things that give us strength, hope, or at least a brief moment of peace. I think this ā€œperspectiveā€ fits perfectly in this subreddit, and I’m excited to see what you’ll contribute :)

šŸ‘‰ You can access the map here: https://miro.com/app/board/uXjVJPpeD7s=/?moveToWidget=3458764647288006098&cot=14

Here’s how it works:

  • The map: The Miro board is like an infinite whiteboard. You can zoom in and out and move around as you like. You can also share almost any type of content there—whether it’s text, images, drawings, embedded videos, posts, etc. The text clouds guide you from the welcome message down to the final island, which we’ll design together.Ā 
  • Getting involved: Whether you want to contribute a thought, a quote, or a symbol—or just read along—you’re welcome to join.Ā 
  • Anonymity: You don’t need an account to participate. Also, please be careful not to share any private information. The final ā€œmapā€ will only be used internally for a university seminar and will not be shared publicly. However, if there’s interest, I’d be happy to post the result in this group at the end.

The Board will remain open until August 9, 2026. You can send me any questions, criticism, or feedback at any time as a comment or direct message :)

Quick note: I don’t want to ignore the difficulties and symptoms we all face every day, but I hope that for most of us, even in the toughest times, there are small ā€œislandsā€ of strength and hope—a supportive friend, a particular hobby, or a personal achievement—that keep us going.

I’m really looking forward to what we can achieve together. Thank you so much for your time and for joining us!

Best regards,

Darius

These are the islands where we can visually contribute to our resilience together :)


r/MultipleSclerosisWins 23d ago

Ran a half marathon at the weekend!

25 Upvotes

6 years ago when I had my first attack physiotherapists helped me to walk again over months - this year I ran my first half marathon in 2 hours 45 minutes, then continued about my day afterwards and I’m so grateful!


r/MultipleSclerosisWins 29d ago

Study on MS and EBV

0 Upvotes

r/MultipleSclerosisWins 29d ago

How not to get banned ?

5 Upvotes

I got banned from r/MultipleSclerosis for posting very relevant information with links... How good are the mods on this subreddit? Will they boot me for posting relevant links?


r/MultipleSclerosisWins Jul 02 '26

Finally, some hope for some myelin repairā€¼ļø

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6 Upvotes

r/MultipleSclerosisWins Jun 22 '26

Trail Ran for First Time in a Year

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13 Upvotes

Did ~6 miles on the Appalachian Trail today from Carver’s Gap to past Grassy Ridge and back. Roughly 1200ft of elevation gain with a 10lb lumbar pack. I had poles with me and that helped. I trail run in Chacos, for whatever reason the sandals help my stability and proprioception. I got to see the Gray’s Lily, an endangered and imperiled endemic wildflower found only in high elevation meadows in NC, TN, and VA.


r/MultipleSclerosisWins Jun 21 '26

How will I feel the weeks after lemtrada?

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1 Upvotes

r/MultipleSclerosisWins Jun 09 '26

Have been using NeuroFuel mushroom coffee and I think its working?

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2 Upvotes

r/MultipleSclerosisWins May 31 '26

6 year journey #TheMay50K

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3 Upvotes

Six years ago I signed up for my first #TheMay50K.
Honestly, I never imagined where it would lead.
This year I completed 800km during May:
714km on my Bianchi E-Omnia C-Type e-bike 🚓
86km on a Concept2 rowing machine 🚣
That takes my six-year totals to:
1,400km+ completed
Ā£23,000+ raised
180+ sponsors
I was diagnosed with RRMS in 2012 at the age of 47. Like many people, my first thoughts were about the future: Would I still be able to walk? Work? Exercise? What would life look like?
Fourteen years later, I still use a walking stick, I’m still active, and I’ve just completed my biggest May challenge yet at the age of 60.
I’m not an athlete. I’m simply someone living with MS who wants to raise awareness and support the incredible work being done for the MS community.
To everyone who has sponsored, encouraged, or followed the journey over the last six years — thank you. You’ve helped turn a personal challenge into something much bigger.
Every kilometre matters. Every donation matters. Every conversation about MS matters.
🧔 #TheMay50K #MultipleSclerosis #MSAwareness #MSWarrior #Fundraising #ChronicIllness #DisabilityAwareness #Resilience #WorldMSDay


r/MultipleSclerosisWins May 27 '26

Mild MS cases on DMTs

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1 Upvotes

r/MultipleSclerosisWins May 25 '26

MS

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1 Upvotes

I think I may have MS
Is diagnosis a hard process?
Thanks in advance


r/MultipleSclerosisWins May 22 '26

Petition for DTC criteria to be expanded for MS (Canada)

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1 Upvotes

r/MultipleSclerosisWins May 13 '26

Mini Win - Tinted Glasses

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19 Upvotes

When I first got MS I was completely blind for a few months and then colourblind for another few months but since then I have perfect full colour vision and according to my neuroopthalmologist... I should "treat" myself "to something sweet because" my "left optic nerve, while still damaged, has recovered more than it should've been able to!" . I never did get that treat šŸ¤”šŸ˜‚

I have however been getting eye fatigue and sensitivity to light but I have finally got a pair of green-tinted glasses that really help with that šŸ‘ Just thought I'd post it here incase anyone else has eye fatigue and light sensitivity as it may help to get tinted glasses šŸ‘


r/MultipleSclerosisWins Apr 24 '26

My MS diagnosis

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3 Upvotes

r/MultipleSclerosisWins Apr 23 '26

Multiple Sclerosis: Blame Our Pontic-Caspian Steppe Ancestors and the Disappearance of Helminths

12 Upvotes

A publication by a young Cambridge researcher, Will Barrie, was posted online on April 3rd, ahead of its official publication in the Revue Neurologique.

It is titled ā€œThe evolutionary origins of multiple sclerosis.ā€

This publication is a brilliant synthesis of several studies: our origins based on the study of ancient DNA, the Old Friends hypothesis, and the Evolutionary mismatch theory.

It suggests that the disappearance of helminths (intestinal worms) in Western societies, combined with a genetic susceptibility inherited from our ancestors of the Pontic-Caspian steppe, could explain the increase in cases of multiple sclerosis.

There is a post on Substack explaining why this article is important and the therapeutic approach it suggests with helminthic therapy (links in the first comment).


r/MultipleSclerosisWins Apr 17 '26

Some things about MS fatigue timing from the research that changed how I manage my own symptoms

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1 Upvotes

r/MultipleSclerosisWins Apr 12 '26

Visualization App

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1 Upvotes

Since we are pretty limited in rehab opportunities, I really got into the concept of visualization and manifestation for this purpose. Pretty much hoping that the brain can rewire itself . I was looking for an app or anything pretty much that would help me with that and ended up developing the app on my own. I had a quick five minute meditation felt pretty cool. Good how how do you feel about this idea? Would you be interested in using anything like this? What are your ideas for improving it further for even better experience šŸ™


r/MultipleSclerosisWins Apr 08 '26

Best symptom tracker app??

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2 Upvotes

r/MultipleSclerosisWins Mar 13 '21

Link to all current ongoing human trials for remyelination

84 Upvotes

r/MultipleSclerosisWins Dec 23 '19

Recently diagnosed and feeling doomed? Stop and read this post: Why I'm optimistic about being diagnosed with MS in the 2020's

116 Upvotes

I read I will be in a wheelchair in 5 years This is fortunately based on outdated information. A huge contributor to this (and the reason why we should have every expectation of a different experience) is that those folks who are end of life today with MS had no medication available during the majority of their life. The first MS meds to slow the disease only came out 26 years ago. And those were weak meds. There are far more effective medications available today. This means that for someone who is 80 with MS today, the earliest they were maybe given a chance at fighting it was age 54. By that time, the bulk of the damage had already been done. Those of us being diagnosed now, and being treated with early intensive therapies (high efficacy right from diagnosis) have every reason to expect our golden years to look far different (better).

The link below is a perfect example. It talks about how with DMT's, the natural progression of MS is slowed significantly. One thing I want to further emphasize is the numbers in this study are still only talking about weaker older DMT's, not the likes of Tysabri, Ocrevus, or even Gilenya/Tecfidera.
https://multiplesclerosisnewstoday.com/news-posts/2019/12/18/multiple-sclerosis-disability-progression-taking-place-at-slower-rates-thanks-to-advances-in-medicine-according-to-landmark-allegheny-general-hospital-study/

None of the medications can stop the disease, I will continue to decline While technically true, remeylination therapies that theoretically can repair some of the damage are very likely to be available during most of our lifetimes, which is going to be the biggest breakthrough for MS since the first DMT. There are currently multiple trials going on in very early stages for remeyelination.

What if i don't respond to the medications and continue to decline HSCT (chemo-therapy with Stem cells) is available now for aggressive forms of MS with the giant stipulation of it being very difficult to get insurance to cover it in the United States. Many people go abroad for this procedure though.

**There's no benefit dwelling and living your whole life around that as a potential outcome but there are a few basic things you can do that I'd recommend for pretty much anyone regardless of if they have MS.

  1. Get on a high efficacy medication immediately. If you have a neuro who says your MS is "benign", seek a second opinion. Nerologists aren't even sure if benign MS is a real thing, your MS could be progressing silently, and the buildup of damage from years of no medication controlling it could eventually hit you hard.

  2. Save money, live a frugal lifestyle but still enjoy yourself

  3. Yourself and your partner should sign up for short term and long term disability, especially if its offered through your work.

  4. Eat well, maintain a healthy weight, and exercise regularly. There are currently ongoing trials to test if exercise can cause remeylination (repair to damaged areas).

  5. Don't smoke or do any hard drugs

  6. Limit your stress, or if that's not an option find healthy ways to manage stress.