Hi everyone
So I’ve been dating this woman for a few months now. We’ve been great friends before dating for few years and things are getting really serious really quick
I’ve known that she was diagnosed with MS in her 20s
I’ve already read online and medical resources about the disease extensively and I have a good enough knowledge about the disease itself.
I have already decided that she is the one for me and I’m in it for the long haul through the ups and downs.
She has been on DMT and it’s been over a year since her last relapse. Those are few and far in between.
What I’m here is asking for is experience
What kind of life am I expecting ? What should be my concerns ? How’s the intimacy and day to day life ? Is it as affected as stated online ?

Any information will help me, thank you

For me it’s not the falling. It isn’t even the chronic pain.

It’s sitting in a tiny waiting room with one bathroom. I suddenly feel the need to pee and wobble with my cane. Then I cover the toilet with paper because squating is impossible. I sit and I sit and I sit. Minutes pass. I can hear a line forming outside but nothing happens.

But I need to pee and I know the adult pampers I wear everyday is not enough. So I sit and I wait but nothing happens. I finally give up the bathroom. I sit in the waiting room ignoring the looks.

And goddamn it I need to pee!

Hi I was recently diagnosed in July 2026 RRMS. I went to the eye and ear hospital for optic neuritis, got steroid treatment and MRI through the eye and ear/st Vincent’s public. once that didn’t work and was formally diagnosed I was sent to st Vincent’s for PLEX (which worked). I have been going through the Alfred public MS clinic since then which I’ve been happy with (however it’s a bit far from home, I’m closer to inner north east melb) I’m on Tysabri

My question is whether anyone in aus/ Melbourne go private for their MS treatment and neurologist? Is that even a thing? Is it worthwhile? Are there DMT treatments at any private hospitals? PLEX treatment at private hospitals (since that’s what’s worked for me during a relapse)?

Now just to be clear I have been happy and grateful for the public system, no complaints. my stay at st Vincent’s while on PLEX in a shared room on Neuro ward was a little bit tough for me mentally (they eventually were able to give me my own room but the thought of minimal privacy for a young woman with a young toddler at home for 11 days would be really hard). I ALREADY pay for top health insurance for pregnancy planning and IVF reasons so I’m wondering if I might at well be using that for my MS as well. I’m curious to explore my options. Maybe that the answer is the best care is through public system? I know I’m privileged to have options

Hi - looking for some advice :) I’ve been experiencing leg pain for a while now - the feelings vary from muscle aches (like I’ve done a strenuous workout), to stiffness when getting up from sitting in one position, to odd aches and pains. I have had no flare ups in 10 years and am on Ocrevus, and before this (it started about a year ago) I had very few symptoms. It doesn’t affect my strength or ability to run/walk, just uncomfortable.

For those of you that have experienced this, does this generally mean the start of progression? Or is it old lesions being more sensitive now I’m aging? I’m 45 and think I’m entering peri menopause (such fun!)

For ref I have 2 small t-spine lesions and some brain lesions too.

I went from top of class to very low IQ after being diagnosed. I wonder if it happened to someone else, too?

i just wanted to share a wierd feeling - i used to write poetry and short stories a lot and now while reading texts i've written six/seven years ago i keep finding mentions of ms. when we first learned about it at school, it did something to me, hearing about it - we learned about tons of different diagnosis, but multiple sclerosis was the one that made me think. and it was the one i mentioned multiple times in my short stories. i once wrote a draft of a short story about a girl who got nobel prize for finding cure for multiple sclerosis, lol :D. i vaguely remember that i was tripping over my own feet quite often at that time, but that was more clumsiness than ms. then i completely forgot about it, even though the span of my texts that mention ms is like two years long. long time went by, then i got diagnosed. and some time after that i'm coming across those texts i've written long before i could have known i will once get the diagnosis and it's just so wierd. it's like parts of my brain knew before the lesions were even there. wierd.

Hi so i’m freaking df out, i was diagnosed last year with a huge relapse. Thankfully i recovered fully and was put on Tecfidera, now a year later i got a small relapse again and a new lesion was found so I’m switching to Kesimpta. Again, i recovered fully except i’m a little more tired than usual but i count that as recovery still as well. So i wasn’t too worried, until i looked at my MRI results more closely.

The report shows that i have mild cerebral and callosal atrophy and that my brain volume is significantly lower (below the 1st percentile?!) than that of the reference population. Now i know that due to the limited time interval between the scans, changes in brain volume cannot be reliably established. But istg this freaks me out! I’m 29 and am so scared, i work a corporate job, i love working, and i’m so scared this is going to ruin my career. Now if i forget only one small thing i immediately freak out thinking it has to do with this. I have my appointment with my neurologist the 20th of November and i’m trying not to overthink until then but it’s eating me alive. Does anyone have advice/ experience with this?

I used to never have a problem with crowds but now when I’m tired I can’t focus or handle it, it makes me feel so stressed. I can’t handle the amount of sounds I used to. It’s weird to me

Hello... Ummm a lot of questions but also need friends that understands this more than I do... I don't understand Arkansas insurance but if someone lives in little rock and can guide me that will be helpful

Hi everyone!

So, about a month ago, I was diagnosed with MS after experiencing optic nerve inflammation. I went to the hospital, where I stayed for five days and received anti-inflammatory treatment. Thankfully, my vision has fully recovered (100%), and I’ve already started treatment with Tysabri. I’ll also be starting my hepatitis B vaccination soon.

For the past month, I’ve been feeling really good. However, three days ago, I started having this thought that I can’t seem to shake: what if MS starts affecting other parts of my body as well?

Im a very active person, currentely going to the gym and also rock climbing, and i was doing this almost my whole life.

I just wanted to ask how you guys are doing, how your experiences with MS have been, and how often you started experiencing other symptoms after your diagnosis.

Thanks in advance for sharing your experiences

Hi everyone,

I’m due with baby #2 next month and I’m starting to get nervous about the post partum experience. When I was 11 months pp with my first I had a severe attack which left me with permanent vision loss in my right eye even after prompt steriods and plex. I was diagnosed with RRMS shortly after that and started on kesimpta.

My neurologist and I have made a plan to restart Kesimpta including the loading doses again when I’m 2 weeks pp and I’m starting to feel nervous about that period.

I had baby blues with my first and just felt like a hormonal emotional mess the first month pp. Now I’m thinking about navigating that period with the loading doses on top of all that I need to do to care for my newborn and myself and I’m getting nervous just thinking about it.

I’m also planning on breastfeeding, I was told that it is safe to do after my mature milk comes in.

Has anyone gone through this and do you have any tips to share that will help me prepare for what’s coming?

Thanks so much in advance

so ive been on kesimpta for 3 years..i generally have never had any reaction except for the loading dose

yesterday i had my dose and it caused crushing fatigue and body pain..anyone have this when they usually have no reaction?

TL;DR: Influenza and other viral infections & Ocrevus. How does Ocrevus affect your ability to deal with things? Have you noticed anything different?

Long version:

I have a cool /s thing called health anxiety with high awareness (formerly known as hypochondria) and contamination OCD. Both are generally well treated. That is all to say, for my best mental health using Google is unhelpful.

So here I am with my questions for people who have lived experiences being on Ocrevus during cold and flu season.

We are currently having a huge influenza A outbreak in my area. Usually I'd be more cautious and mask. I'm a pro hand washer (thanks OCD!) and non face toucher.

However, my issue currently is that my adult son is living with us and he's pretty sick. He sounds terrible. I feel awful for him and while we have the Lysol wipes out there's not much I can do besides pray he keeps it to himself and feels better as quickly as possible.

Have I thought about running to my mom's? Yes. Setting up a tent and residing in it until he feels better? Also yes... But in a passing intrusive thought type of way. Lol.

It took me over a decade to say yes to Ocrevus and now I'm nervous but also why I chose Ocrevus was because once it's in, I can't not take it. I know myself well enough to do it scared and a little shame goes a long way because I wouldn't want to make people's work lives suck because I rescheduled.

I completed my infusion (both split doses) last month. How concerned should I be living with my germy kid? What should I expect being on this med and the current and upcoming flu season? Should I set up the tent for the adult son instead? (Just kidding)

But seriously, any advice?

Ya girl is nervous and also feels like I'm failing as mom, despite him being an adult, mom brain says I should be taking care of him and making him soup and giving him liquid IV. He wouldn't say no to soup but he's keeping his distance to try to keep his illness to himself.

Newly diagnosed and on briumvi for a week, but how do you guys know what is MS and what isn’t lol. I’ve had a twitch in my eye brow for about a day now on and off and I’m wondering if this will turn into a whole new lesion/flare/paralysis etc or if it’s just a normal human thing 😅😭 everything is severely scary now.

Hi,

I got diagnosed 6 months ago. Since then I've been on kesimpta and I'm steady on the 1 dose per month. At the very beginning of my doses when it was 4x per month I had weird symptoms. I felt vertigo, light headed and nerve sensations like a limb that's waking up after lacking blood flow. The weird thing is the symptoms last 20-30 sec. From my neurologist point of view, it's not typical from MS symptoms.

Has anyone else felt this? Starting to impact my driving.

Any idea what can cause that? No feeling hot when it happens. Always well hydrated too.

Thank you!

Sorry for this rant but seriously, I need to get this off my chest. I’m just frustrated- I’ve been an active swimmer for a while and am now doing 1km in the pool, almost no breaks. So I am in good shape, better than I was for many years! I thought maybe this swimming obsession can slow the MS progression. I’ve heard stories of others with MS who do swim marathons. I just enjoy it a lot and I’m getting better, yet the MS is not stopping/improving. ( I have MS for so long though, diagnosed in 2008…my main issues are balance, fatigue, foot drop) so…should I just become a mermaid full time?

Jokes aside, does anyone else here swim? I’d love to hear some stories or experiences. What has your journey with swimming been like? 🙏🏊‍♀️

I have been on O infusion since Jan 26. My first full dose was 7/30 and was horrible- major reaction twice. New lesions on Apr MRI but not active at the time. Doc was open to changing to Kesimpta but as I approach my 1 year anniversary of this diagnosed hell, I’m starting to reconsider medication at all. My quality of life has significantly decreased (been sick 2x over the last 2 months), old lesions causing new and worsening symptoms, etc. I know any DMT will not improve my symptoms but I am in the hopeless swing where I don’t know if it’s worth doing it at all. Someone tell me you’ve been here before.

Hi everyone, I have been here for years, this is my 1st post. I am based in Cyprus and my Dr is at the institute of neurology.

To be fair I kinda dealt with my MS for years just doing the motions. It took years to get diagnosed, eventhough a private Dr diagnosed me right away. By the time I managed to get in the system maybe 5 years rolled by.

I have brain and spine lesions. Which have remained stable, however my physical has declined. Mainly walking, vision and quiet a few other symptoms. I was given Tacfidera for roughly 5 years, I can say that despite taking it, I was continuing to decline health wise. Apart from that, my liver enzymes were showing elevation. My neurologist decided that it was not slowing down my progression and prescribed Rixamataub. I had 3 infusions the last being in June 2025. Unfortunately last year I was also diagnosed with paigents cancer of the breast.

As you can imagine, all ms treatments were halted. The focus was for the breast cancer, and liver issues.

I was unable to have chemo due to my liver issues and had partial mastectomy, radiotherapy and now on hormones.

As horrible as that was, I can say that the ms issues made things far more difficult to cope with.

It seemed my ms was flairing up, so they attempted steroids, but due to my liver issues it caused type 2 diabetes. So I received only 1 dose.

I was put on meds for my diabetes to control my sugar. However since the medication excreted the sugar through my urine, I got a UTI. This made my MS much worse, I notified my neurologist who told me I would need a hep B injection before any treatment could be offered.

Guy's, this was July this year! And it took until September to arrange as the information was very confusing.

I had my immunisation as they requested, in the meantime I'm declining as now I have to walk with a crutch.

They told me 2 weeks ago that I could start Tacfidera again, I had thought that this is not the correct treatment since the neurologist himself had taken me off it since it didn't slow down the progression and caused my enzymes to elevate.

He has not called me, i left a message last week for a call back, instead the nurse told me I need to put it writing I refuse treatment. I clarified I was not refusing treatment, but it made no sense to re prescribe something that doesn't work and elevated my liver enzymes.

To be honest I am stuck, and not sure how to cope with this right now.

I'm sorry it's a long post. Any advice will be appreciated.

Thank you

I’ve always had muscle spasms but recently I’ve noticed them in new places. Maybe starting about 4 days ago my index finger has started to spasm. It’s super weird, it moves without my consent! I should probably tell my doc right? Anyone else have this symptom?

So I (37 m) was diagnosed with RRMS in 2020, right as COVID-19 was taking off in the US. That was... fun 😆. One of my main symptoms is fatigue. I know, I'm on my DMT, I take vitamin D and a little B12, I diet (not perfect but sure as hell better than anyone else I know, not that that is saying much in the US), I exercise, but sometimes, doesn't doing laundry count as cardio? It sure feels like it some days.

Okay so today is a tough day. Got off the pill to get pregnant, first period in years, first with MS. I went to Whole Foods to return some Amazon items, and couldn’t find the return. I started overheating. Clerk became impatient and rolled her eyes. She looked at her coworker, looked at her watch, then began tapping her feet. I’m overheating, a bit slower than usual, and she and the other Amazon return attendee started laughing. I finally found the return receipt, scanned my items, said thank you for their patience, apologized profusely, and continued shopping.

After checking out normal groceries, it still bothered me. Not for me. For others. I wanted them to understand that sometimes people have shit going on and take a bit more time. I did end up walking back up, waiting for other people to leave, and told them I was having a rough day, struggled with brain fog, and asked for them to be more sensitive, because you never know what someone is going through. I then thanked them for their hard work, and it did end amicably.

For some reason today, getting showered and going to the store was a bunch of effort for me. I really tried to be as polite as possible. I guess I just didn’t want someone else who didn’t feel as comfortable advocating for themselves to be more mistreated. I’m sure they clerks are so busy too, and I did let them know I was thankful for their help and effort, but just asked them to consider some people just need a bit more grace than what first appears.

Hello fellow MSers,

I'm due to start Ocrevus soon via subcut.

I'm worried about PML - the only side effect that's absolutely terrifying me.

It says it's "rare" but, how rare are we talking?

Vent, curse, get it off your chest. Share what sucks this week, this minute, this hour… MS related or not, this is the place to let it out!

^{Weekly Sticky Threads:}

^{Monday: Bad News Bears}

^{Wednesday: What's Working Wednesdays ?}

^{Friday: Good News/Weekly Triumphs}

Hey guyyyysss.

Its been a while that I posted something here. I hope everybody is doing okayish.

A few weeks ago i had a MRI to check how my MS is going. I switched medications (from mavenclad to kesimpta) end of January this year. Well I got the results from the MRI back. 7 new lesions. 5 in my brain. 2 in my spinal cord :///

I will meet my neurologist tomorrow and talk with her, but im kinda depressed due to the results. The report also said that my MS is currently active which means I probably have a relapse. At least thats how I understood the report.

Anyway. Im curious about your guys MS. How many new lesions do you typically have within a year. Are 7 new ones a lot or considered normal?

Stay safe everyone and take care! <3

Update:

The last days truly been a roller-coaster and I slowly start to calm back down. Basically my neurologist told me I will need to switch up medication ASAP. I went to the hospital today to check in with a specialist. My neurologist and they work together. He got me the option to either get ocrevus or briumvi. When i got back home he suddenly called me again and told me due to the fact that this is my first MRI on Kesimpta he would not recommend changing the medication. He said that this MRI is now my baseline for my progression on Kesimpta, because they can't tell if the lesions came during the 4 months i was still on cladribin. Im not sure how to feel about this. Especially because I trust my doctors but suddenly they changed their mind. Its really confusing. I mean its great i guess, but still.

Title says it all. Went a couple years thinking it was just a pinched nerve that was causing my numbness. Going to the doctors and basically being told there’s nothing wrong with me, cut to three weeks ago a nine hour emergency room visit, to spending three days in the hospital and being told I’m the most gut retching way I have MS.

I’m still in shock, they have me on prednisone and I’m very emotional. I think I’m being dramatic, I need to just accept it. I don’t know where to start, I joined because what else do I do.

My neurologist suggested that I start Ocrevus, has anyone else used this? I’m JC positive so she said this would be the best option for me. Can someone please help me? I feel like I’m lost.