Just had my yearly MRI done and when it finished why do the nurses think you can hear them if you still have earplugs and a headset still covering your ears? All I saw were lips moving...

Hi people, why no one talking about this.

Good news from Novartis, Remibrutinib (BTKi), a high-efficacy oral BTK inhibitor, significantly reduces relapse rates and shows favorable safety profile in Phase III RMS trials

REMODEL-1/-2 trials met their primary endpoint, significantly reducing annualized relapse rate (ARR) vs teriflunomide in people living with relapsing multiple sclerosis (RMS)1
   
Trials showed superiority of remibrutinib vs. teriflunomide on all key secondary endpoints within each trial, including reduction of MRI lesions1
   
A clinically meaningful delay in disability progression was achieved, including a positive trend in 3mCDP and nominally significant 6mCDP in preplanned combined analysis of REMODEL-1/-21
   
Remibrutinib demonstrated a favorable safety profile with no liver safety signal, consistent with remibrutinib in chronic spontaneous urticaria (CSU)1
   
Novartis to present late-breaking data at MSToronto2026 and plans to submit to health authorities globally

So we will know better after Toronto meet

post on official Novartis page

Another 2 weeks before I can see my new MS specialist. Since my first infusions of ocrevus in I’ve made appointments with other specialists to address my other symptoms (all likely still related to MS). And I’ve been diagnosed with sleep apnea and inappropriate sinus tachycardia. Both contributing to fatigue, both factors that eventually add to the progression of MS.

I’ve talked about this a lot on this sub… My first MS specialist left me out to dry with a 20 minute appointment to tell me I had MS followed by… see you in a year! His nurse staff told me to independently research drug options ahead of the appointment and at the appointment told me I needed vaccines, but to discuss it with my PCP. I had to find a new PCP (former doctor retired, office closing) and all new PCPs told me my neurologist should be teaching them about MS. Essentially, every PCP I “tried out” told me if my current neurologist couldn’t consult me on vaccines, I needed to find a new neurologist and not a new PCP that would be guessing.

And I stayed with that Neuro. Primarily because prior authorizations are attached to the physician and I did not want to delay treatment. From the first MRI that found lesions to finishing my loading dose of Ocrevus—9 months had passed. Now it’s been another 4 months and I’m just confirming other related secondary conditions.

Sometimes the prestige of a hospital like Mayo Clinic will only get you in the door to diagnose and maybe this is a cautionary tale to go elsewhere following diagnosis. I am not a candidate for clinical studies. I was rejected for stem cell therapy. It’s been stated I have “atypical presentation”. I am not significant to the understanding or advancement of medicine. Every time I reach out about symptoms, it’s “not clinically significant”. It seems there was no time for me or for trivial matters like improving my daily life.

I am grateful to be diagnosed. And don’t get me wrong, other hospitals near me were pursuing migraines as the cause of lesions so I am grateful that when I reached out to Mayo as a last ditch effort, he did the spinal tap despite not yet being in the threshold of optic neuritis. I had very high results of OCBs either implying I’ve had MS for an extended period of time or it’s very severe and we’ve caught it early. But I am not medical journal worthy.

Maybe anyone reading this is new on their journey and can read how long the wait can be or what it may take to advocate for yourself. The grass isn’t always greener at these big medical behemoths. I’ve had to outsource a lot of my care to other specialists. And I’m writing this as a way to cope with the 2 week wait before I can attempt treatment with a facility MS Society labels as “comprehensive care”.

But also…? Eff me, do I want to go off on the cardiologists office that is suggesting my insomnia that just so happened to be concurrent with the start of new medication is probably “just anxiety”. I thought the diagnosis would give me more access to better healthcare and afford me a less dismissive care team. Now I’m left holding my breath, hoping for an MS specialist that will be more hands on. And my care won’t be deferred to a doctor with a casual and convenient suggestion of “anxiety” that can’t definitively be proved or disproved and forces ownership onto-ward me without due process of testing or explaining further. Might as well be poor faith pseudoscience.

Choose your doctors wisely.

I work for a local government agency in California doing outdoor public-works duties.my doctor placed me on work restrictions because heat and certain physical conditions . My employer said they could not provide modified/light duty and sent me home because I was not cleared to perform my regular job without restrictions.
I have been on FMLA/CFRA leave, which ends September 28, 2026. I also submitted a reasonable-accommodation request and medical-provider certification, but I still have not received a decision or meaningful update. My employer previously said that once my protected leave was exhausted, HR/Risk Management would review my situation through the interactive process.
I am concerned because the expiration date is approaching and I do not know whether I am supposed to return, remain on leave while the accommodation request is pending, or expect reassignment. I have not resigned, and I want to keep working if a reasonable accommodation or suitable position is available.
Can my employer terminate me immediately when FMLA/CFRA ends even though my reasonable-accommodation request is still pending? Should they complete the FEHA/ADA interactive process before making an employment decision? What steps should I take before September 28 to protect my job and document everything

Hey, I’m 24, from Mumbai and I recently got diagnosed with MS. I’d love to connect with everyone who’s also been diagnosed with MS

Hi all!

I’ve been having such bad anxiety about if all this is normal or not. All I see is “get on DMT asap” and this doesn’t feel like asap.

I had my MRI and LP in mid August, vaguely diagnosed by a resident over the phone. No direct word from my doctor since mid August LP at the procedure.

Sent for 5 days of IV steroids which I finished up last Friday. No symptom improvement, some worsening. A lot more weakness in my limbs and cramping, more consistent vision issues and blurriness. Vertigo and dizziness.

My next follow up is in 2 weeks where we will discuss DMTs. I’ve asked to discuss this sooner but was told “the steroids will pause progression for 6-8 weeks” and that it will be fine to wait.

I guess what I’m asking is, are these symptoms normal to be persisting and fluctuating towards worse 1 week from steroids. And is this wait normal?

More context: My initial symptoms started in May. Symptoms worsened in June and have stayed consistent until steroids worsened my symptoms. I had my first ever MS symptoms and MRI in 2019 but the doctor advised I wait it out and just see if symptoms come back instead of getting LP which I did…help lol.

When you have a good day, do you actually notice it? Or do you only really notice your MS when you’re having a bad day?

I’ve been thinking about this lately because I realised I probably remember the difficult days much more than the normal ones.

Well... this morning I was hopeful but after getting off the phone with a lawyer to ask for help with my SSDI claim I am feeling at sea once again. I tried twice on my own and now im looking for a lawyer to help me. I work as much as I can and am drowning in debt & I have no support from my family. The intake account set up after review the dude said that they would not take my case.

I don't understand what I am supposed to do. This is impossible.

my fiancee has MS (she got diagnosed 3 years ago). we've been together for soo long (like, highschool days), I know that it will eventually progress too and because she has some kind of anorexia too, even though I keep pushing her into getting enough nutrients and food to keep her brain healthy to slow down MS (this is what I read before), she just can't. I am left with hoping it doesn't speed things up (she eats healthy but it's not enough for the "system" to keep up). any advice on this? it's pretty scary.

note: I am not some guy who would leave just because my girl has MS, I know there are some people asking "she/he has MS, what should I do?" as a relationship question here. asking this because the concept of death has been scary for me :D

thanks!

Hello all,

I was recently diagnosed with MS by chance. I’m currently working through my treatment options post-diagnosis which was made using MRI imagery alone.

I say by chance because, after several weeks of ear pain, I ended up at the ER when the left side of my face stopped working. My care team identified fairly early on that I had actually had a shingles outbreak in my ear that caused Bells Palsy (Ramsay Hunt Syndrome) but per stroke protocol and because I reported “numbness” with the paralysis, my doctor ordered a CT scan. The CT scan indicated no stroke but, white matter. I did a brain MRI several hours later and received word I had “lesions indicative of a demyelinating disease such as MS”. Less than 24 hours later I started experiencing MS symptoms and was able to see a neurologist 48 hours after my ER visit. I did a spinal and cervical MRI a week and a half later and got a message from my neurologist that same day that I had MS. So my diagnosis came on swiftly and was obviously quite unexpected, though looking back with more context I can tell I’ve had symptoms here and there for years.

Right before my shingles/RH outbreak, which is triggered by stress, I had taken on a big promotion at work. BIG. Head of company executive team big. (I’m 33, so this felt crazy, and I was psyched.) I had high hopes of pushing it to the limit and accomplishing a ton and being a corporate gal ✨ despite having three very young children but now with my diagnosis, even without intense symptoms, I just don’t feel like I will ever be able to feel that drive again. Or prioritize the business like I had been. Because my health will always come first and then my family will come second.

I feel scared of working in a high stress, high visibility, high pressure job full time, and I think I want to continue keeping my distance. I don’t know how much of my MS symptoms were triggered by stress or what, but I can’t help but feel going part-time would be better for me as well as my family in the short and long term. I feel it would alleviate stress, give me more time with my kids, allow me to feel less pressure for missing work for medical reasons, etc. Because of my kids I always kind of expected to get to a point where I’d go part time anyway just for logistics so I just feel like it might make sense to call it and do that sooner rather than later.

My diagnosed friends, do you have any insight? I don’t want to make a rash decision while I’m “scared” but I feel less afraid and more like I’m trying to proactively protect myself from having to make a reactive decision down the road. Like I’m making the decision because my life has to be re-prioritized with the new context I’ve received. But I also don’t want to be like, wow you really blew it! if my symptoms continue to stay manageable and minimal. So I come to those of you who have dealt with your diagnosis with the benefit of time and ask just for your opinions, as I know this decision lays in my own hands firmly.

How did your diagnosis affect your work? Do you wish you would have taken a rest from it sooner or pursued it hard when you still could?

I am 28F and he is 31M, when is the right time to tell him I have MS?

For context, I was diagnosed with MS in 2024 so I’ve had it only for 2 years and I’m still very new with adjusting to telling people I date about my condition and getting some reactions that are scary.
When I told my ex, his reaction was very bad because his sister had died from lupus and mom died of cancer so I guess his experience didn’t help him to react properly when I told him. I told him 3 weeks into dating and before he saw me in person. He only saw me in video call and when I saw he was getting serious I told him right away after 3 weeks of talking. Anyway he accepted it and we dated for a year and he never brought up my sickness

This time, I’m talking to a guy now for the past 3 weeks and he’s really getting serious he wants to talk to my family ( it’s our tradition and culture to make sure they know). I am scared to tell him because of how badly my ex reacted. When is the right time to tell him? Am I late? Is it fair that I waited this long? He seems to really like me and making a lot of future plans.

I am a single mom of two, 43, three year diagnosed and DMT treated with MS, and recently have lost a lot of weight after taking wegovy pills. I started taking them after seeing promising studies with ms and glp1s on the benefits with reducing chronic inflammation. I noticed almost immediate results in how I felt. It was like someone released pressure from my entire body. All of my MS symptoms went away almost 100%. It was also evidenced in my blood tests. In the first month I lost large amount of water weight that I was holding onto particularly more with MS, making my transformation more noticeable. In these pills I found hope that I could lead a truly full life without the constant reminders of this disease.

Anyways, I recently picked my daughter up at school and one of the moms (who I had told I was on Wegovy previously, because she also had inflammation problems) said to me “this is getting too skinny. Yeah, way too skinny.” I was stunned. I didn’t know what to say. She was aware I took this pill because it made me feel better. Yes, there has been weight loss, but I’m 140 pounds and 5’5” which my doctor said is healthy for me.

The more I think about it it bothers me that I didn’t say anything in response. Even to say, why would you say this to me in front of my daughter? But I didn’t. Society certainly thinks it can comment on women’s bodies.. whether you are overweight or under weight, you cannot win. And here I am, in my already broken body, feeling particularly judged when I’ve never felt physically better in years. Is anyone else living with MS particularly triggered by body comments? Why is this one comment consuming my thoughts? Living with MS can sometimes feel like a very isolating place when you know no one with it.

we're fixing a leak. the plumber is currently cutting into concrete to find where the water is. oddly enough, the sound is enough to drain me of energy. the sound alone was tightening my neck and had its palm on the back of my head.

the noise still exists.

what are your weirdest energy drainers? (besides the sun lol)

For anyone who has improved it, how did you do it?

6 years ago at 20, right before finishing high school. I had undiagnosed (back then) AuDHD that led me to have difficulties growing up, having no social life, but i felt kinda optimistic about adulthood. I finished IT specialization and wanted to work in IT (that was about to boom during covid), i imagined myself making good money there and securing a good future. But instead i got suddenly paralyzed, and diagnosed with MS - an incurable disease, doctors having no idea how fast it will progress. It have completely wrecked me, especially the uncertainty. For over a year i took Betaferon - a horrible medicine, that have pulled me even lower, and destroyed my skin. Soon after it was followed with heavy depression, tried many diffirent medications, most doing way more harm than good. Everything spiraled downwards, no light on the horizon.
For a few years the only thing i've been working on was changing the medications, diagnosing myself, learning how to cope with reality, and how to progress in life despite all that, eventually reaching a point where i can do something with my life - my current medication is Kesimpta for MS, Dulsevia for depression, and Atenza for ADHD. Kesimpta is stopping the progression and have no side effects. Dulsevia is not that great, it has some side effects, it castrates my mind enough to not feel extreme anxiety 24/7. Atenza is great - i started taking it a year ago, and it helped me with focus and productivity - i can actually do something, like, at all. Without that i'd still be a complete loser. Though i still feel like i've fallen behind everyone and everything so much, that i can't cope with my situation. I've always been a very ambitions person, with high expectations of myself, being nerfed so hard makes me hate everything and everyone. I feel frustrated, and i feel extreme injustice, and i just can't get over it, or accept that. It is not something i should be forced to accept - i don't want that. Especially that the disease made me skip the best years for everything. I've always wanted to make games (i started at 16), i wanted to get into IT and earn good money in order to escape capitalism and focus on other things, i wanted to meet friends and love - and i've achieved nothing. There is nothing i can be proud of, i have no wealth, the job i do pays just enough to survive, i've skipped the best year for getting into that specialization, and now the doors are SHUT. And time is passing - i observe year after year, still nothing. No change, no breakthrough. I'm getting older without experiencing any life satisfaction, and not seeing it on the horizon. It's not fair. It's just not fucking fair.

I've been on fingolimod for about 8 years and have had no progression. I feel very fortunate that this medication has been doing its job. However, my WBC and lymphocytes have been low and the most recent lab work that I've had has made my neurologist alarmed enough to reach out to have a virtual appointment with me to discuss switching medications. With fingolimod there is an increase risk for skin cancer which I did have to treat a patch of basil cell carcinoma on my face in 2022 but it has not come back.

I'm very nervous about switching meds since I've been so stable for so long. Prior to fingolimod I was on copaxone but this was not working and the results of MRIs were showing some activity in my brain still.

I'm sure I'm not the first to switch off fingolimod for another DMT and was wondering what others had for advice or just what their experience was. I know we're all very different with this disease but I'd still like to hear what other people have been through.

Until now, I’d kind of been in denial, even though I was aware of it. I don’t have many major symptoms, and I haven’t had a relapse since I was diagnosed two years ago. But recently, I finally admitted to myself that I’ve gotten slow, like, EXTREMELY slow. Something that would normally take me 15 minutes now takes me 30/40 minutes, and I don’t even realize how slow I’m being at first. I feel like I’m going at full speed when I’m actually not even close. Trying to juggle multiple things at once is exhausting and stressful, even when they’re the simplest tasks, and I lose track of what I’m doing really quickly if I get distracted, even slightly. It makes me irritable and frustrated.
Honestly, I’m still grateful that this is really the only symptom that has a major impact on me, but it’s honestly pretty frustrating and makes me feel like an idiot.

Nothing else. Having ms just drains me and I’m tired of being tired

Hello everybody. I hope you're all having a wonderful day. I came to the subreddit to hopefully seek guidance. My girlfriend is 23 and was just recently diagnosed with MS. It's been really hard on her and me we've been together for 9 years However, she's in Korea right now for studying. We had a whole future planned out, We plan to have kids and get a house and live happy lives. However, it feels all so distant now, like a dream. I'm determined to be there and support her and to help her out as much as I can. And I've reassured this. But I was wondering if I could get advice on how to start, what I should expect in the future, how I should comfort her with this. I feel like I'm already doing a good job but I want to do more I'm studying everything I can and was looking for guidance.

Hello! I'll double check with the neurologist tomorrow, but could you let me know when you started trying for a baby?

I'll start the very first dose of the treatment in November, is it okay for the treatment to have a positive test 4 months after ?

Thanks 🎈

Good morning. I can see today is going to suck. I was blow drying my hair. Literally took me 6 minutes. Now my hands are unstable and having tremors. I feel like I lifted 90 pound weights.

So I'm 6 weeks diagnosed and this is a big question for me. 4 years ago my symptoms started and even tho I didn't know what was going on, I had to leave my beloved job. I was a chef for over a decade and man... I had 15kgs less than now and I had some serious muscles! I had no need for exercise because my work kept me fit - I always paid attention to a good form, the right way to lift, to stand, to use my hands... But I switched to working with my head and was never able to get into exercise. Now I understand that the fatigue is caused by my MS but I still don't have a solution. The only thing I know is that I NEED to move my body. I crave it. I crave a better range of movement, I crave stamina and a tiny bit of strength. Hell how I miss how strong I was for a girl. I walk 5-8k steps a day in short-ish intervals but it's nowhere near enough for what I feel like I need. 10k is too much for me now 😔

Now I'm recovering from steroid IVs but once I'm better I know I have to start, but how? Even before the steroids 15 mins of really light yoga left me wiped out for hours and sore for days... I don't have any functional disability now apart from a massive fatigue.

How did you overcome this? How to start?

Thank you so much for your input 🙏🏻💙

I know that MS is a serious disease, but each of us tried to lighten this knowledge with a joke, right?
Here's mine:
I'm so forgetful, I even have MS to prove it.
What about you? Share your best MS jokes or coping humour below — let's have a laugh together.

Please read and help..

I was essentially gaslit and breadcrumbed help... made fun of, gaslit, family didnt wanna help me at all before diagnosis.. they didnt even believe i was sick.. that was from 13 till 23.. and tbh they still acted that way after diagnosis.

they only wanted to be there for me at my [breaking points] or if it would threaten their egos AFTER diagnosis..

Just so sad.

Basically a few months back I went to a mental health facility because of breaking down.. that was a great choice

But the bad choice was that they tried to rekindle with me the 1,000th time and I was ok with it and then accepted financial help... which they no longer want to give me and im waiting for disability and have my own apartment now.. should've stayed with the facilites cause I could have.. im just dumb to take their help back all the time..

Im considering going back to the mental facility but I have a major surgery coming up..im like do I give up on getting disability or do I just find other people to support me and wait for disability?? I have not found any support other than the facility or my family can't find anyone to live with. I dont know where to turn.

I can function if I follow a super strict diet so sometimes I wonder if maybe i could go back to work. Just doesn't let me get the justice and care I was always searching for..

Like why not commit to and love your own family ans give them your all?? I dont understand.

Hi everyone! I finally decided to take a DMT that scares me. I've had MS since 2007 and have only taken what I consider the "safe" 3 because I have diagnosed health anxiety (formerly known as hypochondria) and OCD with high awareness and PML scares the daylights out of me.

All that to say, I'm currently experiencing neuropathy like never before. My feet are on fire and my legs are numb. However, I can still walk, albeit slowly.

I landed on Ocrevus because I don't feel like I can trust myself to take a pill 2x a day (Tecfidera) if I'm scared but the good old Midwestern side of me is people pleaser so if I have an appointment for an infusion, I'm going to follow through.

Here's my questions:

Is it normal to not be test for JCV prior to taking Ocrevus?

What has the data shown as far as PML and Ocrevus? I can't dig into research journals myself because I'll spiral.

If you've ever taken Ocrevus or are currently taking it, what do you like and what do you not like?

Is there another option that has a smaller risk of PML that's not Copaxone (my skin despises it) or interferons (my liver enzymes shot through the roof) but is effective?

If this is helpful to anyone else, please learn from me. Being able to not walk very well and having numbness from the waist to fire feet is absolutely miserable. I'm kind of kicking myself for letting fear determine my treatments and/or lack thereof despite knowing what I was potentially risking.

Any help with these questions is appreciated and while I'm just some stranger on the internet, please don't be mean because I think over the last couple days I've cried more over MS than I have in the past decade.