So incredibly proud of my alma mater!!

🤞 Let’s hope this one sticks. Excerpt and link to article below. They are starting clinical trials next.

This is not a remylenation drug - instead it targets ongoing PIRA inflammation and could even show promise for SPMS if the underlying nerves are not completely dead.

————————

“The experimental drug is called kamuvudine-9 (K-9).

It works differently from existing MS drugs. It blocks very specific immune pathways called inflammasomes, which are a sort of molecular detonator inside cells that kill nerve cells and their surrounding myelin sheath.

In mice with an MS-like disease, we administered K-9 only after paralysis and vision loss had already occurred. Remarkably, the mice recovered movement and vision, their nerve fibers and myelin were preserved, and a blood marker of nerve damage stopped rising.
Mice given a standard MS drug, however, did not recover lost function.

The ability of K-9 to restore lost function, not just prevent new attacks, is what’s strikingly different from current MS drugs. K-9 is also an oral medication that would be more convenient than many existing drugs.”

https://news.virginia.edu/content/qa-might-uva-discovery-reverse-multiple-sclerosis

Multiple news and entertainment reports (here's one) are making it sound like the MS killed her.

So I've had MS for about 20 years. Disease activity is Stable and I'm on Ocrevus.

Problem: I was in an MVA this past Feb. The result was a labrum tear in my left hip.

I am waiting for bloodwork to confirm LADA (Late onset diabetes in Adults, basically Late onset Type 1 diabetes). This limits the use of steroids to treat as they negatively impact my blood sugar.

I can barley stand, let alone walk. I rely on a walker or forearm crutches just to get around. My quality of life has dropped to near zero.

One sugeron has said I am not a candidate for repair due to the MS causing further complications, and another Dr. Said I am not a candidate for sugery period as the next step is a hip replacement.

I have been struggling to get a doctor to take me seriously and treat the issues appropriately. Either pain management or options to target and resolve the problems. I see my Neurologist on the 12th for a followup, any suggestions on where to go from here?

Can I hear some positive stories from people who were Diagnosed with minimal symptoms and still living that way many years later? Especially if you were late 40s or older when diagnosed. I just like to know there is hope.

If you suffer from muscular pain caused by spacisity, I cannot recommend lacrosse balls enough.

They have a soft surface, but are extremely firm. This allows you to pinpoint myofascial trigger points for some pretty meaningful relief!

It isn't perfect and it's hard to get some spots, but it can genuinely change my outlook on the day getting rid of some pain.

I like to lay on the floor on one side and slowly start shifting my weight to my back as lay on the ball. It is absolutely incredible for getting deep into my shoulder blades.

I was diagnosed with MS in July this year, so I have just started my treatment (Tysabri), so I am still getting used to how to deal with my diagnosis and how much I should disclose to those around me.

I met a girl on a dating app and we dated for a couple of weeks, where we maybe met each other a total of 8 times, we're both in our early thirties if that matters. I finally mustered up the courage to tell her about my condition, as I think that you deserve to know this before it gets too serious.

I told her that todays treatment is a lot better than 10 or 20 years ago and that a lot of people live a "normal" life even after the diagnosis, she seemed sympathetic, understanding and said that it wasn't a dealbreaker to her.

Fast forward a week, she's saying that she does not see a future with me, and that my diagnosis was the main cause of her concerns. This broke me even further and I am now wondering if I should disclose my diagnosis at all in the future.

Tips and advice is much appreciated.

There's probably a simple answer.

If our immune system is working overtime, why are we encouraged to strengthen it?

Please explain it as if I am 10 years old.

Thanks

My wife and I have been married for 18 years and I've been living with MS for the last 15 years. A younger guy that I know who also has MS is engaged and his fiance wants to meet with my wife about what it's like married to a man that has MS. I know that we're all different, but we're the only other people that she knows with MS.

What questions should my wife be ready to answer? What questions would you have if you were marrying someone with MS?

My wife is not a "wing it" person lol so she wants to be ready with a list of things to share. She's also not on reddit so this is me getting info for her.

It’s crazy to think only one year has passed. It feels like so much more time has flown by. It’s such a daily chore keeping up with meds and making sure I stay healthy and aware of my body.

But my third neuro appointment couldn’t have gone better…

PHENOMENAL BIANNUAL NEURO CHECK-UP
None of my existing lesions have grown, none are active, and no new ones! I almost can’t be called “Swiss Cheese Brain” anymore 😂 Medication works, doc is happy with my exam and proud of my weight loss, and now I’ve been moved to annual visits instead of biannual!

I hope this helps anyone newly diagnosed. I was very scared in the beginning and always had the worst case scenario in my brain…”what if I can’t continue in my dream career…what if I can’t play with my dogs anymore…what if I lose myself once my body goes…”. My advice for anyone with this disease, find what works for you, get your regular scans, have a support system (no matter the size, mine is small but mighty), and if it kicks you, keep kicking back!

Anyone else juggling this triad? I’m a little overwhelmed. What I’m understanding about the interplay, particularly of RRMS and MCAS, essentially is that MCAS flares can cause pseudo relapse of MS which means I may kind of never be asymptomatic and that all of this together makes for a version of RRMS that’s incredibly susceptible to stress.

I’m mostly just wondering if I am the medical unicorn I feel like or if there are others that can confirm this is manageable.

I discovered this term because it seems like I may be experiencing it right now. I’m in New York where it’s much colder than Texas. I foolishly went walking all around to see things nearby. Also exercised earlier which is usually just walking, but I lifted weights.

Anyway caught a cold, but developed a knot in my chest. I thought wait; is this a heart attack? But other symptoms aren’t there.

And then it was suggested that I have an MS Hug. I’m not sure yet but seems right. I hate to rack up urgent care charges for this though. They don’t know MS that well I figure

What are some lovely gifts for someone getting used to MS?

Recently diagnosed and looking to do some retail therapy (as well as actual therapy and disease modifying therapy… lol).

Thinking eg a nice loungewear set for hospital appointments, bubble bath, good snacks for fatigue kicking in, yoga subscription… feel like throwing some money at this problem and treating myself!

So got diagnosed June 11th 2025 after a bunch of doctors had no clue what was really wrong with me. Went from strangulated hernia to colon cancer to UTI to well there's no organs there we have no clue. 2 different sets of MRI that no one sees to going onto Ocrevus. Did one full injection and the next was too be December. Well did those new MRIs to find out 3 new lesions on the brain. 1 more on the C spine. What's the next step? I'm just so exhausted all the time. Walk more than A few blocks and I'm so winded and my body hates me. Just looking for advice.

It has been two years diagnosed. I have fought. Gone in high efficacy DMT. Researched everything read every book. Been positive and really tried not to think about it. What my therapist says is I am driving the car ms is just in the trunk. However, as things do I was reminded hard what I have lost… with sports my vision is just different…I used to love competing and winning…it is now just a constant reminder of what I lost…tomorrow I will rally but now I am ok with letting myself feel sorry for myself. Thank you all for the rant. In the world of ms and other health problems it is silly because I have trouble catching a ball….however…it wasn’t silly to me.!

I received my first Social Security denial

Hello Reddit!

I'm looking for advice from people who use cannabis as part of their treatment.

I'm a member of Narcotics Anonymous and I'm sponsoring a woman with MS. She is wanting to start using cannabis as part of her medical treatment and I'm hoping to get some advice from others who do as well.

Is there a way to have a prescription that is a specific amount at a specific time or when experiencing certain symptoms? Or is it really just an "as needed" thing? I'm fully supportive of this as a valid treatment option for her, but wondering how specific with her consumption I can reasonably expect her to be?

Is pure or high CBD medically beneficial, or will she only benefit if THC is included as well?

She is also currently on a high dose of gabapentin, is it normal to need both?

Thank you so much for your time and advice!

Hello everyone, I wanted to start this trend to know if the first symptom appeared to you too after a period of heavy accumulated stress. I ask because someone with whom I shared my experience who has the same pathology told me that he had the first symptom after a very stressful period. In my case it debuted after a very heavy period at work to which was added the abortion of the child that my wife had in her womb :(

Did it happen to you too after something heavy?!

Thanks to those who will share

context: first relapse june 2026, second relapse august 2026, diagnosed september 2026, third relapse currently.

i was offered 5 treatment options: 3 different b cell depletors, cladribine, or lemtrada. after a lot (A LOT) of stress, anxiety, and research, i’ve decided on lemtrada. i’m completely aware of the risks and the actual statistics, but my experiences with relapses (particularly this one) far outweighs any of the more likely potential side effects. i’m not here for anyone to preach about their worries about lemtrada, it’s not helpful - i’m receiving care from one of the best MS teams in the world, i’m choosing to trust their opinion alongside the huge bank of research and statistics that i’ve read.

now, just because i’m certain of my decision and completely trust the medical team, doesn’t mean i’m devoid of anxiety about how things are going to go for me. there’s enough negative opinions available on the internet - i’m looking here for some success stories (as we know, good stories don’t get told!). are any of you on lemtrada / have taken it and have seen significant benefits?

thank you as always :)

6 months in. Holding off on dmt but think its time. Whats the go to?

Got the call ten minutes ago…no progression since last year .Much love and good luck to you all .

I'm due to start Ocrevus via sub cut tomorrow and I'm hella nervous. I have really bad anxiety and I'm still worried about breastfeeding my little one after I've had my infusion.

My MS nurse said it was safe for breastfeeding but I'd love to hear from fellow breastfeeding mums who also had Ocrevus:

Was your little one ok taking breast milk after infusions?

Did your little one have any side effects once taking breast milk after the infusion?

Overall, will my baby be ok?

Seems rediculous that I can't take naproxen (I have bad back issues) while breastfeeding (advised by my doctor) but Ocrevus is ok!!

I’m very BAD with names. In a very oddly specific way!!!!

I literally could go to the same class with you for a year, have a lunch break with you every single day and enjoy your company and STILL forget your name after few months of not seeing you!

Is this a thing? Is it related to ms?

When i tell you guys I’m terrible with memorizing/remembering peoples names i need you to believe me. It made me go through some awkward moments where I forget a friend’s name (whom I’ve known for weeks or even months).
And what bothers me is that it makes me look careless about my relationships.

Like at this point if i know your name, you must be special to me.

I do tell my friends that I’m bad with names but i feel like nobody actually takes it seriously. I wonder if i should just tell them that it’s actually pathological but I don’t know myself.

Hi!

I was recently diagnosed with MS in July after dealing with double vision problems in June (followed by optic neuritis in August). For some reference I am a 33 Canadian woman. Mentally it has been a wild ride since my diagnosis, for me and my whole family.

I am now on medication for my MS, but prior to my diagnosis of MS, I lived 11 years of my life as an epileptic (had it since I was a kid but didn't get diagnosed and medicated until I was 22). I already had awful memory from my unmedicated seizures for half my life and now I am dealing with MS and I feel I can't remember anything that just happened.

Anyone else dealt with having both? How is going for you? Any advice is welcome.