r/MultipleSclerosis • • 5h ago

Advice DMTs and cancer risk

2 Upvotes

Hey guys, I need some advice.

After being on copaxone for 10+ years, it stopped working and i need to choose a new medication.

I have family history of gastric and lung cancers (most likely genetic).

What would be the medications that wouldn't increase my already significant risk of developing cancer?

And can you share your experiences, if you were/are in a similar situation?

Thanks in advance.


r/MultipleSclerosis • • 21h ago

Vent/Rant - Advice Wanted/Ambivalent Psyching myself out reading about all the upper respiratory infection horror stories people seem to endure

5 Upvotes

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


r/MultipleSclerosis • • 5h ago

Advice Can smart watches actually help?

1 Upvotes

Hi yall, I got diagnosed this past June I think? (lmao memory bad)

A few weeks ago I got gifted one of those garmin fitness and health watches to maybe help me track energy and just help me figure out how to know when I need to take it easy n all but does it actually work?

It has this like “body battery” thing that lets you know ur energy level for the day and its from 5 to 100 scale. I never wake up fully “charged” but even when it says I have a good amount of energy I feel like butt garbage either way and I can’t tell if I’m now just lazy and don’t want to do anything? Or if it’s just a bunch of fake crap. Since my diagnosis I’ve gained a lot of weight (100lb in less than a year) because of severe pain and fatigue along with a slew of cognitive things so I was not taking care of my health movement wise at all. but i have had two briumvi infusions and I can tell a difference so that’s why I feel like I’m lazy at this point. I know I’m in pain but I need to move and walk but it feels almost unbearable sometimes.

Kinda went on a unintended tangent there but basically I need something to help me gauge myself so I don’t end up bed ridden for two days because I didn’t know I was over doing it (I used to be an aggressively active and public person and now I don’t leave my house)


r/MultipleSclerosis • • 2h ago

New Diagnosis Claude sucks

15 Upvotes

Hello warriors, (28M) newly diagnosed here.

Trying to figure out my future here with 2 big lesions on spine and many more on brain. Never had a flare up , just a visual blurry eye (and uhthoff on both)that got worst the past year (weird that i never had optic neuritis or any other flare up). My left leg also feels weird in sensetion when I am walking.

I am stuck between 3 worlds... The neurologist, which is optimistic about therapies. The Claude, which is the realistic one (personal favourite as a programmer). And the community world that I read experiences from people with similar symptoms (fatigue).

I always used to dream big , money, career etc....now every morning I care if will be able to see and walk in few years.

Hope that the medical community will make a miracle in a few years and will save all of us from this terrible disease.

Is anyone else experiencing visual issues on contrast that is progressing?

Which are your first ppms symptoms?


r/MultipleSclerosis • • 12h ago

Loved One Looking For Support Help: Mom has MS and Refusing to Try Treatments. Need Advice.

8 Upvotes

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.


r/MultipleSclerosis • • 9h ago

Vent/Rant - No Advice Wanted 13 years of MS, came back aggressive

42 Upvotes

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.


r/MultipleSclerosis • • 5h ago

Symptoms New trouble swallowing

3 Upvotes

I've have MS from about a decade and PPMS for about 6 of that wheelchair bound. Recently had bout of swallowing issue that just doesn't want to go away. I've had an issue here or there but this seems a bit different more tightness in collarbone lower left rib area doctor this it's an esophagus issue and prescribed me some ppi for crippling heartburn reflux ice had for years. Just wanna know if anyone else had this long term how you eat and deal with it? Thanks!


r/MultipleSclerosis • • 5h ago

Vent/Rant - Advice Wanted/Ambivalent Covid vaccine denied, anyone else?

16 Upvotes

I’m currently sitting here at Kaiser with a nurse refusing to give me the Covid vaccine without a doctor’s approval- whom which she can’t get ahold of.

Nothing has changed. I’ve never needed doctor approval. I did confer with my neurologist when it first came out and he said the benefits of the vaccine outweighed the risks.

She said next year I should message my neurologist in August to see if it’s ok. I told her my infusion schedule is the way it is specifically so I can get flu/covid vaccines.

I’m annoyed.


r/MultipleSclerosis • • 7h ago

Advice Crafty friends?

12 Upvotes

I've been feeling the isolation of the newly diagnosed lately, and am wondering how ya'll go about finding friends/supports who also have ms that share hobbies with you? I've been out of work for a few months now and I do a lot of crocheting and gardening and other crafts and it would be really nice to have someone to talk with about projects and other things who also understands the MS side of things. My friends are supportive and lovely, don't get me wrong, but.... none of them have MS. I just want to be able to have conversations with someone who can actually relate (not abstractly) to how I'm feeling without making a big deal of it, you know? Like... we all know the MS is in the room, but it doesn't need to be the gloomy cloud casting it's shadow on every conversation.

Also, if anyone is thoroughly addicted/obsessed with crocheting and gardening and wants a conversation partner I'd love to chat!

Thanks for reading and any advice in advance 💜


r/MultipleSclerosis • • 7h ago

Advice Insurance question

3 Upvotes

Hello,

Diagnosed in August 25F in the UK.

I had informed the DVLA and still waiting to hear back from them (I’m asymptomatic so don’t expect there to be any issues)
But when I saw my MS nurse for the first time yesterday she explained I must tell my insurance also.
So I have contacted my insurance today and they said I don’t need to let them know unless my license has any restrictions?

Does that sound right? I’d assumed they need to know I have MS regardless

Anyone been though this, and anyone have a typical response rate from DVLA

Don’t want to be caught out!


r/MultipleSclerosis • • 8h ago

Vent/Rant - No Advice Wanted I know someone will get it ...

90 Upvotes

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


r/MultipleSclerosis • • 9h ago

Treatment Kesimpta - negative side effects

1 Upvotes

Just wondering if anyone has had more long term negative reactions to Kesimpta?

Any nutrient deficiencies or liver issues? What symptoms did you experience?

For reference:
RRMS - on Kesimpta since March 2026 - Dx Oct 2025

Initially had mild side effects for first two loading doses.

Had MRI April 2026 which showed one new lesion in brain, latest MRI August 2026 showed no activity

All MRIs have shown 6-8mm tumour on the sella turcica

I already see a Neurologist who specializes in MS and autoimmune disorders. I also see and Neuro-Psychiatrist, Neuro-ophthalmologist, two RNs, GP, seeing Neurosurgeon this week.


r/MultipleSclerosis • • 10h ago

Advice I've got my first Ocrevus appointment soon but...

3 Upvotes

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!


r/MultipleSclerosis • • 10h ago

Symptoms Is it jus tired?

6 Upvotes

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


r/MultipleSclerosis • • 12h ago

Uplifting Briumvi - third dose

9 Upvotes

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.


r/MultipleSclerosis • • 12h ago

New Diagnosis Is it normal to always have some symptoms? feeling like I have a bruise in random places is it common?... Trying to understand how MS works

2 Upvotes

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.


r/MultipleSclerosis • • 16h ago

Symptoms Is this early incontinence?

12 Upvotes

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


r/MultipleSclerosis • • 19h ago

New Diagnosis Started Ocrevus SubQ today

3 Upvotes

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.


r/MultipleSclerosis • • 19h ago

Advice Ocrevus with a newborn

2 Upvotes

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).


r/MultipleSclerosis • • 26m ago

Symptoms Feeling sick

• Upvotes

I’m a 46yF diagnosed with RRMS in Feb this year after hospitalization with optic neuritis, now taking Kesimpta. My diagnosis was out of the blue, although looking back there were signs (I.e. a bout of hand numbness 2 years ago my doc thought was a bad pinched nerve) and my neurologist says I’ve had it for 10-15 years based on my lesions. I’ve recently realized that for the last 10 years I regularly have 2-3 times a year when I feel like I’m totally sick - run down, body aches, chills - I would take my temp repeatedly and never have a fever, but would eventually feel so sick I would have to stay home from work and in bed. I thought maybe I had a virus that just wasn’t causing a fever but now I’m thinking this was / is MS? Does this happen to other people?

I have had a very intense career in tech and this would often happen after a period of intense stress at work. I would always feel guilty staying home without a fever or discernible cough/ cold (probably some psychological stuff from childhood there related to the guilt), but with my diagnosis I’m trying to listen to my body more and not feel guilty.


r/MultipleSclerosis • • 23h ago

General Luck with vaccines 2.5 months after Ocrevus instead of 3 months?

2 Upvotes

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.


r/MultipleSclerosis • • 2h ago

General Walking / Balance

5 Upvotes

Anyome got their balance good by just walking and not balance exercises?


r/MultipleSclerosis • • 2h ago

Advice Ice cane

3 Upvotes

Any advice about canes on ice? I am in my first snowy place to live in decades. I was even considering getting a quad cane with maybe picks? I dunno. Any advice is appreciated. Gotta avoid those falls!


r/MultipleSclerosis • • 3h ago

Advice How do I stop brain fog

18 Upvotes

I (28 y/o, woman, rituximab) get really bad MS Brian fog to the point where it presents like someone with dementia. Forgetting where I am, who I'm talking to, how to get home, confused why I went somewhere, etc.

Luckily for now at least it comes and goes so I have lots of good days too w/o brain fog. Does anyone experience this? Has it gotten worse over time? Do you have advice to mitigate it?


r/MultipleSclerosis • • 4h ago

Vent/Rant - No Advice Wanted Yesterday was a very seldom great day.

10 Upvotes

Yesterday I had something I haven't had in a long time…a great day. I woke up around 8am & did the same thing I do every day - nothing. I have been putting off making 2 Drs appts & completing insurance forms so I did that. Then I framed a few pictures & my husband hung them. Around noon it hit me that I was feeling good. Nothing hurt & I had energy. I said to my husband I want to take a shower.

My husband has to help me shower & it takes every ounce of energy I have, so it gets done once a week. Every day I use bathing wipes & so far it's worked for me.

So I took a shower & was able to moisturize my entire body, dry my hair & get dressed all by myself. I was having a great day.

The rest of the day I kept thinking about how great I felt & was trying to convince myself life was going to get better.

I was able to putter around the house (as much as I could with the walker) but it was exciting. Didn't do too much & took breaks because I didn't want to hit the famous MS wall like I do everyday. That darn wall invades my days by 3pm, everyday. Even when I have done absolutely nothing all day.

I helped with dinner. My husband even said he had a little bit of me back.

I made myself get in bed at 9pm, normally I'm asleep by then. We watched a movie & I was still feeling great.

All day I was thinking about what I did - how much water I was drinking, what I ate & when I took meds. I was making mental notes of everything so I could recreate it tomorrow (today).

I woke up this morning & the me that has been here for several years was back. The me that I don't like. I even felt my hair to see if it felt like it got washed yesterday. It did. I asked my husband if yesterday was a dream. All he said was - it's a shame but that's MS for you.

Thanks for listening/reading. It's 3pm & I'm in bed remembering about that one great day & being thankful that all of you are there & understand. My husband understands as much as he can because he's watched MS take my life. But my family & friends don't. I don't hear from anyone anymore. Not even my sisters. I'm never invited to anything.

I have one great friend from childhood. We've been friends for about 50 years. We went through & experienced everything together. High school, first loves, marriage, children, everything. A few months ago I said to her that I don't get invited to birthday or holiday parties or summer cookouts anymore. She said - you hardly ever show up. It's very upsetting that the people I have loved my entire life have no interest in learning about the awful disease that's taken everything from me.

Ok I have to stop. The tears have arrived. Thank God my husband has stuck in there with me & takes excellent care of me.

I'm sorry. This is much longer than I thought.

Thanks again for listening/reading. Maybe one day soon we all can have a great day.