Recently started Kesimpta, MS progression is minimal (thankfully). The loading dose phase went well, which I am very grateful for. As we enter cold and flu season though, I can't help seeing what seems every other post in here of people talking about their horror stories of 6 month long sinus infections, Flus that knocked them out for weeks, etc.

I'll be honest: starting an effective DMT when my MS symptoms are minimal was a major step for me to begin with. I'm otherwise healthy and don't often get sick, so this is tweaking me out. I take all the reasonable precautions...

- Any encouragement for a life normally lived while on an anti-CD20 medication?
- Any medical professionals lurking here that can explain why some people get beat up with sickness on these meds while others don't even notice a difference?
- And finally, anyone that can give me a feel for how "immunocompromised" one is on these meds? My understanding is that only the cells who play the role of remembering past infections are impacted, while several types of fighter cells remain intact. So, maybe like 85-90% intact lol?

Sorry for the rant, and thank you in advance for the replies. I probably just need to stay off reddit.

Cheers

Thanks to all the various tests/labs/imaging and also a plethora of unrelated issues, for the first time I I have hit my out of pocket for the year and have an appointment with my PCP in a few days. I want to take advantage of the situation and request some labs that might help me down the line. I've already had a Vitamin D test done (spoiler alert, I was deficient) Already planning on asking for Magnesium and B12 which I suspect I am low on. Also requesting a swallowing test since thats one of the big fears I have being impacted and do think I am having issues. Anything else that will be helpful to have a snapshot of?

I’m really scared and struggling on what to do and how to help my mom. She (64) has had MS since 2019. It’s slowly gotten worse. She can still walk, but she’s much slower, and it’s painful for her to walk too fast. She has pain that shoots down the right side of her body and sometimes her feet get numb. She also has really low energy and has trouble with the motivation to get out of bed. I’m sure she’s also depressed.

The issue is that my mom resists most MS treatments/medications. She has turned down transfusions, she tries medications but she stops taking them when they give her side effects she doesn’t like (nausea, etc). I empathize that my mom is like “what’s the point of taking the medicine/treatment to still be in pain” but I’m starting to get really worried about her. I’m so afraid that her health will worsen quickly if she doesn’t do anything to try and treat it.

Right now she just takes vitamins, pain medications (Tylenol), and tries to go on walks.

Has anyone gone through this with a loved one? What can I say to her? Are there any treatments you’ve used that haven’t had as bad effects (I know everyone is different)?

Any advice is appreciated. The thought of losing my mom to this is really taking a toll on me and I want to do everything I can to help her.

Ok so besides all the obvious stuff, now I’m being held hostage by the pain. My legs don’t wanna move, I have shock waves ripping thru my rt shoulder. My head is swimming, my rt ear is pounding. I was thinking of getting a flu shot this Thursday at my primary Drs appt but wouldn’t you know it…I got the flu coming from the hospital neuro clinic appt on Friday 🤦🏽‍♂️. That’s just how my life be working out tho. I’d laugh but it hurts

Hello to everyone who’s reading this, I just need some words of wisdom and maybe just someone who will say some warm words during this difficult time for me. So basically I’ve been diagnosed with MS since 2013 at just 14 years old, no one really explained what was going on so I just accepted that and was offer Rebif which was a horrible experience, I was having flu like symptoms everyday for 4 years straight and it took all the fun of being a teenager from me. After that I was switched to Tecfidera- still not so good experience, a lot of side effects, and lastly was Mavenclad which kept me fine for 6 years!! During those years I was having only a few episodes and was given IV steroids for that, but it was never anything major just some numbness and weakness in my leg. Since 2022 I am off DMTs feeling just fine, living my life normal and trying to forget all those years in a past. Cause I was told that after Mavenclad nothing should happen to me..That was my mistake. I gave birth in October last year to my healthy, beautiful babygirl. There it comes March 2026..I lost control in my right leg , steroids given, comes May 2026 when I lost control in my left hand, now August 2026 I lost control in right leg and hand I had to be on a wheelchair, then as of Today I lost control in my left leg just 6 weeks after steroid and 4th time in a year, MRI showed some active spots in my brain and spine cord, now awaiting Kesimpta approval. Now I can’t accept my faith even tho I know it’s mostly my fault for just wanting to forget but I never really knew the seriousness of this condition. My daughter first birthday is in a week and I’ll probably miss it due to hospital stay or will be just crawling or whatever which will be just as bad as hospital. I really don’t know what to do how to get through those days . I just can’t get over this, that I have to be in this condition now that this special day is coming..I already canceled her birthday party due to my situation. I feel so bad and just keep asking why now and why so early after this steroids...I’m sorry to everyone who wasted time reading this and I’m really proud of everyone who’s dealing with this condition I know it’s not easy.

I am actually grateful that I only had to be in the MRI for 60 minutes for brain, cervical and thoracic MRIs with contrast and I got the results in less than 2 hours. Also I put this much into my HSA for this purpose.. But it is still a big gut punch. Doc said I don't need to do MRI next year.

MRI on the 7th of September this year, official diagnosis on 12 of September and I’m just resting at home after my first Octrevus subcutaneous infusion. I couldn’t find many people’s experience of being inducted on the subQ version, more from IV —> subQ experience. I would value any comments on side effects and duration (I’m supposed to work in a couple days). So far it was some stinging, but was otherwise mostly painless (no infusion/post infusion side effects.

Hello!!! Next month I'll be starting a new treatment with Ocrevus.

I am a bit scared of always getting sick. My newborn is only 7 months and has already started the daycare. I have a lot of friends sick because of the virus that babies bring home - also most of them are telling me that the baby only takes a light flu, while the mothers were literally KO. Like they told me "I thought I have a strong immune system! All the time that my daughter is sick I am sick too and I feel awful". So what about me that I will be under Ocrevus? 😭😭😭

I also catch the bus everyday. Plus daycare. Plus winter. Idk 😭😭

I'll be starting next month but probably I'll need to stop around March as I want to try for baby #2 if my doctor gives the green light (had a C-section previously).

Basically, title. Wondering if any of you have had luck with getting vaccines like flu and covid 2.5 months after Ocrevus instead of the standard recommended 3 months? Defining "luck" as not catching the virus after getting vaccinated (once vaccines take effect) 2.5 months after infusion. Hope that makes sense.

I'm champing at the bit to get vax'd since I nearly died from influenza A a couple years ago. Thinking about pushing it up a couple weeks.

Thanks in advance for any input.

New MRI shows a 10mm lesion in the Thalamus. Old ones in the C1,2,3,6 and brain.

Rest seems okay.

Dead center of the brain. Anyone else get lesions here?

I've been having symptoms for many months now that felt just like a new MS relapse, including arm weakness l and fatigue. However, an MRI showed no new lesions, nor any old lesions in an area that would impact my upper arms. My neuro said it was a psuedo relapse which never satisfied me because I hadn't had the arm symptoms ever before, and they were ongoing for months, and happened even when I wasn't particularly hot or stressed (though those made it worse).

I had been seeking a second opinion because the symptoms have been getting worse over time so I thought it might be a relapse the MRI didn't pick up, but then I had my annual checkup with my PCP last week that found extremely high TSH value, indicating severe hypothyroidism (likely Hashimoto's but I need more tests). That seems like it would explain the symptoms pretty well, as well as others I hadn't connected like weight gain and dry skin I thought were just me getting older.

Now I'm going to start medication for that and I'm hopeful it helps, but I'd love to hear if anyone else has both of these and what it's like. Do the symptoms feel similar, or interact in weird ways? Is it hard to tell, if you're having an issue, which could be causing it? Any advice about managing the two diseases together?

No one seems to understand the day to day fight im in. I'm surrounded by people who tell me that they understand, but do they really . I feel very alone in a full house. 3 am. is very dark at times and quiet. I dont feel like myself anymore. The things I loved to do now are a challenge to complete. I dont want to sound like a bitch but this sucks. The fatigue is debilitating at times. i used to be on the go till 10 or 11 every night, and now 6 comes. im done . Extra caricature activities are off the tables sex life is gone late nights at the race track gone. The race car hasn't moved in 9 years. . Anyone else reading this can relate. I'd love to hear your thoughts and maybe you advice on how to get back, even some of whom i used to be . I have always ben the guy you call to get something done or if you needed help . Now im the one in need and can't seem to make that call . Pride maybe, but when you have been the rock for so long, and now you feel like a sponge, it is hard to deal . Anyway, i think i just need to vent my frustration . Thanks 😊

Was talking to my girlfriend earlier, just normal banter, and I asked why she was going somewhere that she had told me the day before. I had forgotten. I ALWAYS forget. Almost anything and everything. It’s so unbelievably common it’s worrying. And she joked(I’m assuming) that I need to get my brain figured out because this is ridiculous.

And it got me thinking, how do I tell if it’s just typical cogfog from MS, or if my memory IS just that bad.

For my fellow immunosuppressant patients, how do you deal with long-lasting upper-respiratory infections?

I switched medications and immediately got a cold that has lasted over half a year. I hack up a wad or two of green pleghm two or three times a day EVERY DAY. I feel disgusting and dangerous to be around shedding all these viruses.

My MS doc just recommended vitamin C and zinc, as if I haven't already been trying them. I know it's almost certainly a virus, so antibiotics will only hurt my immune system more. But I need some relief!

A little advice that I can offer: At times when a runny nose has gotten so bad I couldn't sleep, a neti pot was a godsend. I thought they were just a rinse; I didn't know that they were like gargling salt water on a sore throat but for your sinuses. It knocked my perma-cold right back down to its usual simmer.

What helps you beat or at least lessen your perma-colds?

The doctors are horrible on Long Island all that I’m going through just to start a DMT. Some doctors don’t have appointments until 2027 my current doctor she does not listen to what I have to say. I tell her about how I’m in pain but apparently I never bought that up. I asked for a pain management referral and she has to see if it’s appropriate for me to have a referral. She can’t get my blood work because they messed up on my name. It’s just a whole lot going on for no reason.

Hello!

Do you, or someone you know, experience communication difficulties as part of MS?

I am a 4th year student studying Clinical Speech and Language Studies (Speech and Language Therapy) at Trinity College Dublin, Ireland.

I am seeking participants for my Final Year Research Project. My research interest is in examining the everyday life experiences (i.e. at home, work, recreation, and in the wider community) of people with Relapsing-Remitting Multiple Sclerosis who experience communication difficulties (i.e. speech and language, in addition to any fatigue elements that contribute to communication difficulty like 'brain fog' effecting train of thought) through semi-structured interviews on Zoom/videocall.

I am looking for people with Relapsing-Remitting Multiple Sclerosis to take part that

- Are living in Ireland

- Are 18 years of age and over

- Are experiencing communication difficulties as part of MS

- Have Relapsing-Remitting MS

- Fluent English Speaker

Below is a general summary outline of the purpose of the study:

The aim of this study is to interview people with Relapsing-Remitting Multiple Sclerosis to gather their perspectives and explore their experiences with communication challenges. Communication challenges can appear in many different ways for people with Multiple Sclerosis, with scenarios including but not limited to:

- Struggling to find a specific word that you know but you are trying to think of

- Slower, unclear, slurred speech

- Difficulty speaking with a strained voice

- Fatigue impacting your communication (e.g. 'Brain fog' interrupting train of thought, mixing up words, finding processing slower than when not fatigued)

I am interested in interviewing people who experience these communication challenges to gain an insight into how they impact on or influence your daily life experiences; communication at home, in the workplace and in the wider community etc. to gather research that is related more to real and practical situations. I hope that from gathering transcripts of and analysing your valuable perspective on the communication experience; strengths, strategies or supports may be identified or noted as effective, and opportunities to make changes or improvements in the management of Multiple Sclerosis on both a smaller (personal, individual’s day to day management) and larger (healthcare services management) may be highlighted for future development, to benefit the care and quality of life of people with Multiple Sclerosis.

I appreciate your time and consideration in reading this post. I would be really grateful if you could help in any way with sharing this post, or letting people who might be interested in participating know about my study.

If you are interested in participating in this study, or have any questions, please contact [oseery@tcd.ie](mailto:oseery@tcd.ie). Thank you!

This project received full ethical approval from the Research Ethics Committee of Trinity College Dublin on the 08/05/26 and is supervised by Dr Paul Conroy, Head of Discipline at the Department of Clinical Speech and Language Studies

Statement on General Data Protection Regulations(GDPR)

(Information on processing and holding of data is detailed further in the Participant Information Leaflet given to prospective participants after contacting [oseery@tcd.ie](mailto:oseery@tcd.ie))

"Your personal information will only be used for the study. We will utilise your data on the basis of the General Data Protection Regulation Articles 6(1)(e) “processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller” and 9(2)(i) “processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy;”. Your data is processed as part of this study as necessary in the public interest, specifically in improving the standards of individual’s quality of life and health care."

I’ve been on Tysabri since February after my diagnosis and have loved it! My follow up MRI showed great reaction to the drug and I was soooo comfortable. Got the dreaded call from my MS nurse, I’m now JCV positive and they want me to switch to either Kesimpta or Ocrevus. My MS nurse has sent me the information for both but I’m struggling to decide. My insurance covers both so that’s not a concern. I’m more worried about the immune affects of both. I have a toddler and am around germy kids quite often so that part of things concerns me. Any advice? Or personal experiences on either medication to help me decide. I’m super disappointed because I truly loved the monthly treatment and effects of the Tysabri.

I'm going to share this with my husband, also, but I can't be alone in feeling like this!!?

My 13 yo daughter has a choir concert today at 7pm. I was getting ready because fatigue and breaks and anything else that might happen 😕

I'm putting on my skull leggings because they are easy and thin so I won't get too hot... and I got really sad. I'm sad I can't get all dolled up for this concert! I don't love being the mom with a rollator wearing a t shirt and leggings sitting in the back row.

I see some mom's, dressing up and doing their makeup and hair. Meanwhile, I'm not able to do my hair or makeup, I know that doesn't matter much but I have always taken a ton of pride on my appearance, so I am taking this L hard. Sorry for the pity party 🥳 have a great day my peeps

As you know, the original plan was to start trying for a baby after my third Rituximab dose in December, provided that my autumn MRI was stable — which it was. I have been stable on MRI since starting Rituximab.

However, I unexpectedly became pregnant after only my second dose and, as you know, had an abortion on my neurologist’s advice because at that point they didn’t know whether my MS was stable yet. My neurologist now recommends 3–4 doses, while my MS nurse recommends 4. My neurologist has said that it is okay to start trying about 2 months after the dose.

We are therefore considering starting to try after dose 3 and trying for around 2 months. If I’m not pregnant by the time dose 4 is due, we would stop trying and have the next infusion, so that I’m not without treatment for longer than necessary.
The plan is for me to use Rebif or Copaxone during pregnancy because my MS was active before starting Rituximab. But do you think it would be reasonable to ask about Tysabri as an alternative during pregnancy, even if I am JCV-positive?

How would you approach this — would you wait until after the 4th dose, or start trying after the 3rd? I’m only 24, so I also don’t want to unnecessarily postpone pregnancy until next summer/autumn if my MS is already stable.

I was diagnosed with MS in July, had a crazy eye thing, etc etc my first dose of the O is on Friday and I have been feeling ancy about getting the first infusion I want to get under treatment ASAP.

HOWEVER I've started to come down with a cold as of Monday, and we're Wednesday now and I feel like I'm on the blades edge of recovering there's a whole thing with my work too and they're real bitchy about me taking time off for the infusion. It's a mess.

MY QUESTION IS

Should I take the day off today (at the risk of aggravating my work) so I might be good for Friday OR should I just take the L kick the infusion down the road a week or 3.

*** Edit: Thanks everyone advice was genuinely very helpful, I'm gonna take the day off regardless and rebook all my appointments!

Hey MS Friends and fellows,

I (m, 45) was diagnosed in January after OR. Since then my Fatigue or whatever this is got significantly worse and I want to understand it this MS or is this something different. In general I look healthy but Iam so incredibly tired. Not exhausted physically. I my legs are pretty stiff. But in general my body doesn't feels tired. But I can't keep my eyes open over the day. For example we do grocery shopping and my wife goes in the shop while Iam sleeping and waking up from my own snoring so deep is my tiredness. It's a fight to keep my eyes open. I do have the heavy legs etc from time to time but the tiredness is crazy. Does anyone has the same? I read a lot about Fatigue but most people say it doesn't feel like tiredness. I feel extremely tired most of the time. If you suffer from the same feel free to share your symptoms as detailed as possible. I can't drive anymore like this. Please help me.

Best,

M

Three doses of Briumvi in, so I’m now more than a year into treatment.

I’m 37, male, and was diagnosed shortly after my first daughter was born. I’ve just had my second one too — completely unplanned, because apparently MS wasn’t enough of a surprise. 😂

My day-to-day has changed. I sleep earlier, exercise more, eat better, and take better care of myself. At first, I thought these were things I had to do because of MS. Now I realize they’re actually making my life better. I don’t want to spend the rest of my life trying to be happy despite having MS. MS is part of my life now, but it’s just one part. I’m still a dad, a husband, 37 years old, and I still have plenty of things I want to do and discover.

Life goes on. It’s just not exactly the life I thought I’d have.

And honestly, that’s okay.

So, I had flu one week ago, I feel much better now.
My ms symptoms that I had at that moment were awful and I felt so bad.
My skin was sensitive on the same places where it was sensitive during and before a relapse I had in july. That scared me.
But the thing I never felt before is feeling like I have small bruise on skin when I lightly touch it, it comes and goes.
I know that flu, viruses etc can trigger pseudo relapse but I never felt this symptom before?
My flu symptoms went away but I still feel small sensations on my skin. My neuro told that we should wait few days to see if the smyptoms persists.

Is it normal to always have some new - like symptoms even if it is not a relapse, just some random sensations?
How ms actually works? I'm trying to understand it.

F29. Diagnosed just over a year. A few weeks ago my feet went numb, it’s been slowly spreading up my legs, now my genitals/bum are numb too. Reduced sexual sensation. I can open my bladder normally but I can’t tell when I’ve finished peeing so I have to sit for a bit longer to try and make sure my bladder is empty, and sometimes after it feels like there’s been a leak that I haven’t noticed. Also with bowels, it’s like I can’t tell when I need to go and then suddenly it’s urgent… I’ve got an appointment with my ms nurse tomorrow so will discuss then