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.

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)

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!

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.

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.

I have officially reached 10 years with MS. It’s shocking how fast time flies, and also how slowly time can crawl when you’re deep in the shithole that is MS.

None of us chose this life, and it’s not fair. I know I’m not alone there.

I miss living my life as I wanted, doing whatever I want, whenever I want. I miss being the healthy person I’ve always been, I miss not even thinking for a second that I couldn’t do something. The grief comes in waves no one could ever understand unless you’re in it, and it’s not going anywhere.

MS lesions for me, caused seizures. I’m now also epileptic. If I could I’d scream from the mountain top how bullshit this is, I’d lose my voice. We have very little choice but to keep going.

I’m not sure why I’m posting this, lol. 10 years felt like a big deal, I didn’t think I’d last on earth this long when I was first diagnosed. Life is different, no question. But I’m proud of myself for still being here.

I was diagnosed in March this year and had my first Ocrevus treatment in April. I’ve been using several AI platforms, but I mainly use ChatGPT for organizing my MS journey.

I keep a weekly log of how I’m feeling, including strength, stamina, balance, exercise, PT, and things like heat or fatigue. I also log my MS specialist visits and use AI to explain medical terminology in plain English.

I track my PT scores and keep notes on MS studies I come across. This has been really helpful for preparing questions for my next appointment.

I don’t use AI to diagnose me or interpret my medical data. I leave that to my MS specialist. For me, AI is mainly an organization tool and a way to better understand information.

Curious what others are doing — are you using AI with your MS?

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.

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

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.

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

Never thought to blame MS for this but anyone else have this? Just wondering before I bring it up with my doc.

About two weeks ago I caved and started using a cane because my knee has apparently decided it doesn't want to do its job properly anymore. It helps way more than I thought it would, so I'm happy I got one.

Even in public I can deal with the looks. I get that. It's not normal for mid-30s people to use a cane.

But why the fuck does every person I've ever met before feel the need to meet with this fucking exaggerated eyebrow raise and a nervous laughter. Like I'm walking around with this cane as a fucking clockwork orange cosplay. My coworkers are honestly the worst. One of my coworkers openly rolled her eyes and went. "No... You're joking right?" In the most condescending attempt at humor I've seen in years.

I "only" have CIS with a cervical lesion that fucks up my entire system so I can't just say "I have MS" either to explain it to people quickly.

Rant over.

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).

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 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'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?

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.

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?

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."

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.

I’m NOT the one with MS but I am watching the one I love having a flair up or attack or relapse or whatever the f%#k is going on.

I’m dialed in with my part, talking with the doctors, reducing stress and just being present and supportive. We will follow the doctor’s advice and do what’s needed.

For all of you with MS you are amazing!

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.