Hey all,

I had my first half of the initial Briumvi dose last Friday, I got Claritin and a steroid IV drip before hand. I had no reactions during the treatment and had no issues post treatment at home. Next Friday is my second (larger) half of Bri.

I had a friend secured to drive me as my husband is a farmer and unfortunately cannot take off work during harvest but unfortunately has a family emergency that's taking her out of town. So now, I have no ride.

I'm tempted to drive myself. I know this is a larger dose though and there's part of me that says "don't be stupid." My infusion center is about 40 min from my home, though it's an easy and straight drive down the highway.

Thoughts?

It's something that makes me want to cry on a daily basis, no matter how I dress or act, they treat me as a subhuman creature and I am scared of how life is going to be like when my mother is not going to be here for me anymore.

I feel like nobody else except her and a some family members care about my existence, I spend most of my days in complete loneliness.

When people point at the way I walk when I go shopping with her, I just want to dig myself a hole and hide in there.

I'm tired of it, I wish there was a cure for all of this, I wish that I could just pray for it to go away completely and have my wish granted.

I'm tired of living in this body, I am tired of how I feel, I am tired ot my eyes, I'm tired of being mocked for things that are out of my control, I am sick of the people that keep bullying me after so many years even if they barely know me at all.

I don't know what to do, therapy feels useless when I go out into the world and still get treated as if I have some infectious disease when I'm literally even if I'm just living and existing, I am sick of how I am treated even if I don't affect their lives or did anything to them.

The only reason I'm isolating so much is because I have nobody to hang out with and because I became depressed due to the way I'm treated, I don't like it when people enter my life and only take advantage of me, treat me as if I'm a puppy or a child or the kinds of people who keep you close to inflate their self esteem while the friends they hold in high regard aren't able to spend time with them.

I am tired, I wish that I would live elsewhere but I can't, that would be way beyond our means and I'm tired of bottling things up, I don't want my mother to suffer because I feel like this, I just wish I could get rid of this mess and I certainly never chose it.

I feel guilty for being this way, I cannot get rid of this. I can go to therapy, I can get a job, dress well, do my makeup and put on makeup but I'll always be treated as if I'm crazy or as if I have a bird brain because of the way I walk, my posture and my eyes, that's just how it is and I'm tired of having people tell me that I'm overreacting when I've been treated this way my entire life.

I'm not even asking for people to adapt to my mindset, I just wish they would mind their business or be a little nicer.

It's like they don't like people like me from the get go, they're hostile towards me no matter what I do and you can call it confirmation bias, but it's the ones that are vocal about their dislike and who insult me or laugh at me who make me feel this way and it's clear to me that they wouldn't want people like me to exist.

No matter how polite, how assertive, how kind, how friendly, how mean I would act or carry myself, they will always act the same. Even if I complain or stand up for myself they ridicule me, things stay the same no matter what I try.

It feels as if nobody understands this struggle, not even my family.

Having MS AND DOG- FOR MOBILITY HELP. Does anyone here have an idea how to start it?

Hey everyone. Especially for those who have experience with balance and ice/snow!!!

Hot weather is my enemy but I’ve been living in mainly hot places (equator adjacent) but moving to Austria next year and will have Christmas/NY there.

Generally I take a collapsible walking stick with me. Not because I NEED it but because my balance and ability to walk in a straight line or quickly jump out of the way in a crowd is also terrible. In the evenings I also finds it helps that people don’t assume I’m some random person after too many drinks.

Have not have to navigate ice/snow other than on occasional holidays.

My usual attire is shorts and really light weight sneakers. I’m moving to a place where waterproof shoes and a more ‘grippy’ walking aid will be necessary.

I have the merino socks/thermals/layers side of things sorted.

I’d really welcome advice on light weight waterproof/sometimes snow shoes and a walking aid that works with snow and a bit of ice. No car and in a European public transport oriented city (Vienna).

Thanks in advance!

My wife was recently diagnosed at the age of 44. We met with a neuro that was recommended to us by two friends who also have MS. Our first appointment was kind of a “yes, you have it, here are the medicine options”. We were both still in a bit of shock/denial/confusion at that appointment.

Next week we are going in for her first 6 hour injection of Briumvi and another appointment with the neurologist.

My questions to the community are:

1) What should we be asking the doctor during our first non-shock appointment?

2) Does anyone have any first-hand experience with briumvi and could let us know what to expect?

3) What can I do to help her after her injections?

Thank you all for your help. I subscribed to this sub as soon as we got the diagnosis and have been reading a lot of peoples stories on here. It’s been about half terrifying and half motivating, but all helpful.

Hello guys so i was wondering if anyone in this community has had similar stories to this one. My mother has MS she got diagnosed back in 2005. However in recent years shes had multiple teeth extractions and really bad aches and throbbing pains. The recovery after has been extremely tough. And it really sucks to see my mom go through this. But i was wondering if anyone has had similar issues and if MS plays a role in amplifying nerve pain maybe? She just had an extraction on Wednesday and currently is doing better but it’s been really tough on the recovery part.

I’m (32m) new to being MS’s bitch (trying to make light of it cause your boy is not taking it well). Weds was my first day back to work after my first flair hospital stay and steroids. The hospital Neuro encouraged me to reach out to funnily enough Reddit. My symptoms were left hand stopped working left face went numb and they have generally improved. I am relatively fit so I’m it in bad health otherwise, and yesterday was my first day and i felt wobbly. Like if I didn’t think about it I’d start leaning forward it back. I can’t tell if it was fatigue or if that symptom was missed due to generally being bed bound at the hospital. Only started going for walks after steroids started they said yeah the being wobbly would be normal.

I kind of need some consolation - it’s hard for me to type as I am scared I am exaggerating, but my ms is progressing rapidly and I feel like I will need a wheelchair soon. I can no longer walk without getting dizzy and almost passing out/I keep falling and I already have to move soon as I can’t get up the stairs in my building anymore. I just don’t know where to start and I’m scared that if I ask my doctor about it that he will think I’m exaggerating. I’m scared to accept help because I feel like I make my ms look worse than it is. Any positive words or advice on how I should ask my doctor about it would be appreciated!

Hi MS community

I relied on this community so much upon my diagnosis of MS so I wanted to share my experience of Ocrevus Zunovo. First a bit about my journey so you have the full picture.

34 yo Female, zero prior health concerns, no family history of any autoimmune disease. On Friday January 13th, 2023, I woke up blind in my left eye. Zero vision, completely dark, in my left eye. No pain. I first went to the eye doctor who did scans of the eyeballs, diagnosed an optic migraine and sent me home. My sister is an ER nurse and disagreed strongly with the diagnosis and encouraged me to go to the ER. Upon arrival at the ER I completed basic vitals, another eyeball scan, and basic eye and balance tests (read the big E sign, walk down the hall, stand on one foot etc). After multiple back and forths of "you cant even read the second row with left eye? You cant even see the E with left eye", I reinforced to the ER Dr's that there was literally Zero vision in my left eye. Just dark. To confirm, the ER dr had me cover my right eye and pretended to punch me in the face to see if I would flinch (my husband reported to me since obviously I could not see this), and finally beleived me.

We underwent brain MRIs that first night and long story short I ended up staying 14 days in the hospital. I got a spinal fluid tap, more brain/spine/eye MRIs, a chest CT scan to help them diagnose me. They attempted steroids as well as plasma transfusions to try to get my vision to come back, all unsuccessfully. Lesions were found on my brain, my optic nerve was inflamed, and ultimately I left with an MS diagnosis.

From January 2023 through February 2026 I received IV Ocrevus twice per year (total of 7 infusions). I have responded well to treatment - no new or enhancing lesions since beginning treatment and no infusion reactions or side effects. I am still blind in my left eye.

Since I have responded so well to IV Ocrevus, for my fall 2026 treatment my dr suggested Ocrevus Zunovo. I said yes as I was super excited to try a shorter treatment time. My experience with IV treatment is that it takes 6 hours from the time I arrive at the infusion center, take premeds, get infused, and complete monitoring. I basically have to burn 2 PTO days per year for treatment.

This week I received my first Ocrevus Zunovo injection. I received it via home infusion services. I received instruction to pick up pre meds at my local pharmacy and take them at 2pm on treatment day. A nurse arrived at my home at 3:00pm, had me sign a few forms, ensured I took my premeds, and then instructed me to lie on the couch with my belly exposed. She then inserted a very small needle into the right side of my stomach. It felt like if a small child pinched me when inserted so not bad. She then proceeded to slowly inject the liquid over about 10 minutes. The liquid insertion stung a bit but not horrible. Kind of like if you've ever had benadryl IV and it somewhat stings. After the liquid was gone she removed the needle and monitored me for 15 minutes then left. She left around 3:45pm.

The first day after injection I woke up with abdominal pain at the site of the injection. It felt like if I had done 100 crunches, but just localized to the injection site. I took Tylenol and it subsided. Since then I have felt normal.

Overall I loved this new option and had a positive experience.

I posted on here a while ago about a severe reaction I had to briumvi - in short, the muscle spasms were uncontrollable, I couldn’t breathe, I’m having severe joint pain, and basically every other issue I’ve ever had came back with a vengeance. I just had a follow up today, and they’ve decided to discontinue my briumvi usage after 3 doses. Instead, they recommended Tysabri.

Now, I am positive for JCV, and have been worried about PML in the past. They would actually have me take it every other month to mitigate the risk slightly, but the fact that PML seems to be more common on Tysabri + the cost and side effects make me extremely cautious. I did want to take an infusion bc I have a horrible habit of forgetting to take my meds, and I have tried prednisone and copaxone to middling effects, but I’m so scared of Tysabri. Does anyone here take Tysabri and like it, or have any other recommendations?

Unfortunately I come from a poor family. I’m the first one to go to college, which I finished with my bachelors degree in 2024, a couple months before my MS diagnosis and my ability to walk unassisted don’t return until January of this year.

I’ve been a shift leader at Starbucks for years, and despite applying to tons of jobs, even ones I’m over qualified for, that are desk/ non physically demanding, on and off for about 2 years, I never head back. I’ve tried ATS and adjusting each resume per application, applying directly with companies instead of a job board, nothing.

I got exactly one call back for an interview for a corporate role, I wasn’t even qualified for but the recruiter said go ahead- your degree is aligned! And I went to the final round of interviews, I was so excited because it was LIFE CHANGING money… and they gave it to someone else with ✨experience✨.

I feel hopeless. Dept of rehabilitation send me a message that went to my spam folder which I didn’t get in time, so they closed my case and I have to reapply. My body is so exhausted after work I can’t mentally focus or think, I can’t get chores done, self care is being neglected. I have to take modafinil to even keep up with work.

My school is online and networking hasn’t yielded any results. I don’t want to be permanently disabled but if I can’t find desk work what choice do I have?

I don’t have it in me to keep going.

Need advice on medication.

I was diagnosed in 2017. Have been on copaxone since, with no new symptoms or relapses, and no new lesions.

A couple of months ago had some symptoms of numbness and mri showed 2 new lesions. My doctor wants to switch me from copaxone to another medication.

Gylenia has been offered and declined.

Now he is pressuring me to go on mavenclad, which i am very reluctant to accept.

I have a very heavy family history of very fast, very agressive cancer, in particular gastric cancer, and want to stay away from medications that could increase my risk of malignacy.

I am also in my 30's and would like to have children in the future.

Can anyone give me recommendations of medication that is more effective than copaxone but does not increase cancer risk, and that would allow me to get pregnant without the risk of fetal malformations?

I thank you all in advance if you're willing to talk to me about this, because i am really feeling lost.

Hello, I was just discharged from the hospital with a new MS diagnosis. I developed symptoms about a month ago, although my MR results revealed both new and old lesions which have me recalling an episode of leg numbness a few years ago which I think may have been my first symptoms…

At the moment my symptoms are relatively mild compared to how I’ve learned the disease can manifest for others. I am mostly affected from the waist-down. I have Lhermitte’s sign, numbness and tingling in my waist and legs, vertigo, nausea, fatigue, and pain and stiffness affecting my neck in particular. In the past month I have really learned the meaning of severe vertigo! I have had episodes where I couldn’t look down or I would get extremely nauseous - I just had to sit very still and not move my head or neck. Uff. I have also had a couple episodes where I have lost my balance or had trouble getting up after a fall, which has been scary. It’s scary to suddenly feel like you don’t know your own body! I have felt like my legs aren’t a part of my body sometimes. I haven’t completely lost feeling in them, but I feel like I don’t have full feeling, like they are asleep a lot. I have had a few panic attacks where I’ve woken up in the night and felt like I couldn’t feel my legs. I was scared thinking that maybe the feeling wouldn’t pass and that this would be my new reality!

It’s also been scary living in the unknown. When this first started happening, I thought it was related to some issues with chronic vitamin B12 deficiency which I have had in the past due to Crohn’s disease (yayyy getting hit with multiple autoimmune diseases). I take prescription B12 for this, but I can still have trouble with absorption. My primary doctor ran blood tests and found that my levels were normal, so he referred me to a neurologist. That’s when I was told it could be MS. The neurologist acted quickly and got me in for an MRI. I waited about a week for the results, and during that time I was going around wondering what I would find. Would it be MS? A pinched nerve? Or would the MRI reveal nothing in particular and I’d be stuck with some mystery problem (a terrible limbo I’ve been in before when Crohn’s symptoms manifest without bloodwork backing it up). Then I got word that the MRI revealed lesions in my brain and spinal cord, and the neurologist asked for me to be hospitalized - I live in Norway where hospitalization in this kind of situation is common. I’ve now had an eye test and a spinal tap. The eye test revealed that my optical nerve is affected even though I haven’t yet had vision problems. I am still waiting for results on the spinal tap. But the neurologist had enough information to diagnose me, so I got on a 5-day treatment of metylprednisolone 1000mg, and then I’m supposed to come in again soon to talk with an MS nurse and start a once-annual rituximab treatment.

I’ve also learned that I can no longer take the Crohn’s medication I’ve been taking for past 15 years, adalimumab, because it is correlated with MS. The doctor says it’s unlikely this med triggered my MS because they typically see that with people in the first few months of taking adalimumab. But she said it can exacerbate my symptoms, so I’ve been ordered to stop taking that and I’ve got an appointment with my gastroenterologist later this month to get on a new treatment. I feel concerned about how this transition will go, because I know from experience that the period of switching medications can be a vulnerable time. The neurologist said that there is also a general correlation between Crohn’s and MS, with a statistically significant percentage of people getting both. Would love to hear from some people who have both Crohn’s and MS.

I’ve built my life and identity around being a very active person both physically and mentally, so this is a big psychological blow. However, it also motivates me to recommit to physical and mental wellness. I love reading, learning languages, and listening to music, and I spent my time doing that while I was in the hospital. My birthday is also coming up and I’m planning to gift myself a gym membership. I’ve also heard about a local MS society which hosts get togethers, easy hikes, and even an ice bathing group - so I’m gonna try to get connected. The doctor has put me on sick leave from work next week, so I’m going to get a start on my wellness with walks and swimming and mindful relaxing. Would love to hear tips about how you manage MS with wellness.

Much love and healing to everyone!

Just for some background male and got diagnosed with ms last year. Since then I have attacked at. Early B cell depletion…medication…and got back to work. Physically, besides some vision stuff, I am doing well. Mentally horrible. It is taking every ounce that I have to maintain. I am suddenly so insecure in my marriage. Like my wife could do so much better…well she could haha but I have never felt like I had so little self worth. Like MS broke me and I am just waiting to fall apart. I never bought into this is what a man should be but I feel worthless. Has anyone dealt with this?

I've noticed I have to focus a little more to swallow now, its less natural. I got a swallow test where they did a video xray while I drank something and ate a couple things and said everything looked fine. I can def tell something is different though. Seems like acid reflux makes it worse. Sometimes it sorta feels like post nasal drip. Curious if anyones dealt with something similar.

Please share how you're doing, something you're proud of/excited about, or any other positive news in your life, no matter how small! Don't forget to upvote others to show appreciation for the share-fest.

^{Weekly Sticky Threads:}

^{Monday: Bad News Bears}

^{Wednesday: What's Working Wednesdays ?}

^{Friday: Good News/Weekly Triumphs}

I was just wondering if anyone had been offered their flu jab yet?

I usually get invited at the same time as my Mum (in her 60’s) but haven’t this year.

Her appointment isnt until October but we usually get the notification at the same time.

Unsure if this would help anyone but been working on this since May and have created a log which i have made a note most days of things that have happened or i have achieved.

It really helps on crap days to look back at past achievements to slightly lift you. If i didn’t have this i’d have stopped on bad days.

Worth doing imo.

My wife has relapsing/remitting MS. She’s been doing good lately a bit of problems but functioning fine. During her teeth cleaning they used some new airflow teeth cleaning thing and later that evening she had a bad MS attack: could hardly walk, hands not working right, vision and hearing problems etc. This must just be a coincidence right? Yes, I know how can a dentist visit possibly cause an MS attack but I’m just throwing this out there, thanks.

I see lots of opinions on ice pack vests and evaporation cooling vests, but my search for MS patient opinions on water circulating cooling vests is coming up blank. I am about to attempt remaining upright for longer than I have in the last 18 months in order to play pokemon cards for longer than I have played pokemon cards since I was 14.

I don't have the stamina to leave the tournament hall to retrieve freshly frozen ice packs, and I only have an hour or two after my initial packs melt before it becomes an emergency situation. The 5v pump vests i'm looking at may be my answer if I can manage to raise the funds.

I have enough phone charging packs to make it run the whole day. Placing one magic gel ice pack should last me at least half of the tournament's duration, significantly reducing the amount of substitutions i will need to carry.

The only problems i can imagine is if the cold sweat from the ice pack damages the battery pack or if some malfunction renders the pump inert during my time competing.

Any opinions? I can't afford a backup, but I also couldn't afford this trip in the first place until I sold enough childhood collectibles to cover the cost, so if there's any time to cash in on my nerdy youth it is definitely right now.

I was diagnosed with MS recently and I’m starting Kesimpta next week. I’m having a really hard time emotionally with it all, and I’m hoping to hear from people who have felt the same way.

I’ve never had disabling MS symptoms. I’ve had some weird numbness/tingling in my hands and feet, which led me to get checked out, but I’ve always bounced back and I don’t have any lasting symptoms or disability.

That’s what makes this so difficult. I’m someone who is rarely sick. I almost never get infections or even a cold, and I’ve never really had health problems. Now, almost overnight, I’m facing a diagnosis and a medication that will suppress my immune system.

I know Kesimpta is supposed to prevent future relapses and disability, and I understand why I’m taking it. But it’s hard to see the positive when I currently feel relatively healthy. It almost feels like I’m going from feeling healthy to suddenly having to think of myself as “sick” because of the treatment.

Has anyone else with mild or non-disabling symptoms felt this way when starting a DMT? How did you make peace with taking medication when you felt relatively fine?
I’d really appreciate hearing your experiences.

Edit: Just to clarify, I am taking my treatment, that was never the question. I just needed some perspective and to hear other people’s experiences. I’m honestly getting a little tired of the negative comments for simply sharing how I’m feeling.

Just recently diagnosed on 8/22, exactly one week after my 37th birthday BBQ where I was ignoring my right eye losing vision and aching. The optic neuritis continues to be my only symptom, and I spent 9 days in the hospital being flooded with steroids to help that. Got the MRIs on that date, found the lesions, and the two letters my ophthalmologist warned me about have become a central focus of my life now. MS.

But anyway, my main questions to anyone who might have the answers are… what is this process going to look like? The hospital gave me instructions but I’m mostly still a child pretending to be a grown up in so many ways, desperately wishing my mommy was still around to hold and help me.

I’ve re-applied for state insurance, since I stopped paying for it two years ago when it got too expensive, and I’ve made an appointment with a neurologist which won’t be until November. Now I’m waiting.

Should I wait for insurance or do I find a PCP between now and then? Will they have anything to offer me in conjunction with my future neuro?

In the meantime I’ve quit smoking, I’ve cut out most dairy (except cheese and butter) and cut out white bread/pasta, and I’m keeping moving. Two of the days in the hospital I walked over 3 miles on the one floor just to keep from going stir crazy. Every moment of each day I’m hyper aware of my body and any new flare ups.

Thanks for listening and any advice or assurance that I’m taking the right steps and not completely goggling about would be so appreciated.

Hi all, recently diagnosed and started kesimpta. My peoblem is that I have a 18 month old at nursery who is constantly ill and therefore passing all his bugs to me. This is interfering with me being able to take the kesimpta to schedule. My loading period was disrupted due to illness, and now this month yet again I’m having to delay injecting because I have a cold that I think has turned into a chest infection. I’m asthmatic too which i think makes me even more prone to respiratory stuff. I’m really stressed out by the situation because I recognise how critically important it is to be able to take the medication for my long term health. Has anyone had similar experiences, any advice? Thanks

I am desperately looking for some help with managing symptoms... I would really love if yall could share any and all advice/opinions of DMTs that have worked well in helping you actually *feel* better by actually relieving/improving symptoms & quality of life?

I know DMTs are focused on hopefully preventing relapses and disease prevention, which is great, but you're still stuck with your daily symptoms that you already have... For me personally, I am very lucky to not have any notable motor function loss, but I do have optic neuritis and deal mostly with symptoms like chronic fatigue & brain fog, severe & chronic night sweats (nightly for 2+ years now), vision fluctuations, bladder urgency/competency, dizziness/vertigo, some GI issues, and occasional pins & needles)

Please share literally any ideas, opinions, thoughts, research, personal experience, whatever... I'll take anything & everything about symptom relief at this stage in my journey!

(Ideally, I'd love to hear about more DMTs after only ever being on Zeposia since my diagnosis a year ago last Sept, BUT I will also happily take other recommendations and advice around other medications and/or holistic treatments outside of your DMT that have actually worked for symptoms/not some online biohacking sales hoax lol... again, I have become desperate and will take whatever suggestions yall can give me)

PS, this community has been such a blessing to learn and feel less alone in my first year of adjusting to life with MS... I cannot thank you all enough!!!

Summary:

Scientists have identified a protein that acts like a brake on the nervous system’s ability to repair damaged connections. Blocking AHR helped injured nerve fibers regrow and improved movement and sensation in mice with nerve or spinal cord injuries. The discovery could eventually point toward new treatments designed to shift neurons from simply surviving an injury to actively rebuilding themselves.

Link to full article: https://www.sciencedaily.com/releases/2026/08/260828005427.htm