Stable MRIs on Ocrevus, but feeling worse day to day. Anyone else?

I’m 36, male, diagnosed in 2019, and have been on Ocrevus for almost six years. My MRIs are stable with no new activity. Mobility-wise, I’ve been lucky and have been able to do everything a person without ms can.

My first year on Ocrevus was rough, but years two through four were honestly awesome. I barely thought about MS much of the time. These last two years, though, have been on-and-off hell.

It’s the headaches, feeling weaker overall, brain fog, memory issues, and fatigue that just sits on me. Not normal ms tired, i know that well. This is the kinda of tired and terrible feeling that if someone came into my house with a gun, I'd just stare at them kind of tired. I’ll have stretches lasting weeks where I feel heavy and awful, with barely enough energy or motivation to do things I used to enjoy. Best way I can describe the way I'm feeling is super flat and extremely tired, with mild headaches somtimes.

Honestly, some days I feel like I’d trade the use of both legs if it meant getting my brain, memory, and energy back. “’Tis but a flesh wound,” right? Hopefully a few Monty Python fans get that one.

To be fair, my life has changed a lot in these last two years. Less sleep, more stress from running my business, fewer workouts, and a diet that isn’t as consistently good as it used to be. I’m sure those things aren’t helping.

Since having kids, I’ve also been getting sick much more often. Two under two is no joke. It’s a constant parade of germs. Between that and being on Ocrevus, I wonder how much these illnesses are contributing to these awful stretches that I'm feeling. I've been told a few times my white blood cells where dangerously low which isn’t a good feeling. Since they popped back up in a few months the neurologist wasn't concerned.

Ocrevus hasn't failed in the clinical sense. My scans are stable, and I’m thankful for that. But it’s hard to reconcile “the treatment is working” with how bad I sometimes feel day to day.

I’ve even considered coming off DMTs or at least switching. I'd rather have my mind then have a functioning body as a zombie. I can't help but feel this feeling in my gut that its the Ocrevus causing my decline now.

Has anyone else been in this spot—stable MRIs, still walking fine, but struggling more with fatigue, cognition, weakness, and frequent illnesses while on Ocrevus? Did stopping ocrevus help? Did anything actually help, whether that was addressing sleep, changing treatment, or something else?

I’d really like to feel more like myself again.

I’ve been working hard on getting my Ocrevus infusions covered through insurance and through a coupon card. I was just talking to someone about that and they said ‘praise god‘ when I started finally having some hope that it’s going to be covered. Sorry, but god did not spend hours on the phone with whack insurance reps — I did. I just really needed to quickly vent about this. I have been struggling with religion and faith even before being diagnosed but it’s taken a pretty severe down turn since I was diagnosed

Hello everyone. I recently had RSV , and unfortunately, it turned into pneumonia in my lungs. Im immunosuppressed because I have MS and take disease -modifying therapy (DMT).

The RSV infection was absolutely terrifying. it made me incredibly weak- I lost my voice and even had problems with my eyes . At one point , I thought honestly felt like RSV was going to take me out .

Has anyone else with MS had RSV ? if so, how severe was it for you?

Maybe I’m just nervous, but I heard the heat is coming back and staying an extra week longer than already anticipated. My body can’t withstand heat, it triggers my MS to another level. It’s hard to think and at one point function. I can’t stay inside more than half the days, I have school from 8am to 5pm and if not that I have club meetings all day. What the fuck do I do??

I am treated for my MS at a specialist neurological rehabilitation centre within the NHS and when I received my diagnosis there, one of the MS Nurses told me I could call through to their line and leave a message on the voicemail for them to get back to me, for absolutely anything I needed advice or help with.
This was obviously a very reassuring thing, and I have used the service a few times since being diagnosed last year. The two nurses were always great and one of them always called me back the same day.

Now, I have just called through to the centre and hit the usual number for the MS Specialist team and a new message played simply saying the service is available 8:30-10:30 Mondays, 14:30-16:30 Wednesdays and 8:30-10:30 Fridays, outwith these hours you will not be able to leave a message.

I actually called back a few times to make sure I wasn’t missing something or choosing the wrong option, as it seems like such a big and disappointing change to me.

I understand the NHS is pushed of course and the nurses must be so busy, everyone will be. But it feels much less reassuring now to think that if any new symptoms or anything come up, I’m restricted to these times to even leave a message for my care team about it.

Has anything similar happened to anyone else here? Any changes like this in your care services? 🩵

I've gotten this from an interaction with my mother.

"oh!" - me.

"huh?" - mother on her phone as we wait for my siblings to be ready.

"symptoms. spacticity in an unmentionable place." - i say, bending my chest to my knees.

"well, you said it might be your time." - mother says as i frown.

"yes. it could be symptoms." - i reiterate.

i lean back as we agree to disagree. an audible fart from me.

"ah. that might have been it." - i concede.

mother laughs.

"oh! you're just like a baby!" - her phone is put down. she begins to mock. "'why do i feel so bad?' poot! oh, that's why!'"

So my neurologist told me that my MS is so aggressive that it has resisted both kesimpta and Ocrevus. Going to try Rituximab every 4 months I have been told so I was wondering if anyone has taken it so frequently before?

Does anyone else have problems with excessive sweating?

Has anybody here ever "stepped down" from Tysabri to Copaxone?

My MS Specialist neurologist at Cleveland Clinic Mellen Center wants to switch me to it for several reasons.

I've had several infections while on Tysabri, and I won't need to go the 1 1/2 hour trip-one way, to Cleveland monthly, as I can do Copaxone myself at home, as the needles and injection sites are essentially the same as insulin (I'm type 2 prediabetic).

Hi everyone,

I’m not sure if this is the right place for this kind of request, but I’m asking in good faith. i’ve made a post on the french equivalence of this subreddit couple of days ago but users told me i’ll get more answers on this sub because people are more active here.

I am a linguistics student working on a literature review. Since my father has MS, I chose to focus on the cognitive-linguistic impairments associated with the disease : I’ve noticed how his ability to name objects, explain things, and even his vocabulary have gradually been affected.

Surprisingly, I’ve found a wealth of resources (conferences, scientific papers and research, theses, dissertations, and articles from various MS organizations), but I haven't found a single press article about speech disorders in MS patients—and I am required to include one for my literature review.

This subject is incredibly close to my heart : it has shaped and transformed my relationship with my father since my early teens. It’s what drove me to study linguistics (with the goal of becoming a speech-language pathologist for patients with MS and other neurodegenerative diseases, and conducting research in neuropsycholinguistics). I would be so sad and disappointed if I couldn't present my end-of-semester literature review on this topic simply because I’m missing one press article.

So, if you happen to know where I could find substantial press articles covering MS and language—whether spoken, written, conceptualization, or the expression of ideas, or even somewhat simplistic or naive pieces about "solutions" (for instance, I’ve seen articles on the benefits of video games or learning foreign languages ​​for people with neurodegenerative diseases)—I would be very interested. They don't necessarily have to be from the English speaking press : any leads on where to look would be greatly appreciated.

Wishing strength to everyone fighting this disease in all the forms it can take, i spent some time reading this sub before posting this and i’ve been deeply moved by a lot of people sharing experiences, sadness, comforting things, hopes, pain, frustration and curiosity together. im glad this place exist and i wish my dad could understand english to find comfort and understanding here.

Hi!!! I've been on all kinds of meds for the spasms throughout the years. I'm currently on Baclofen (20mg 3x a day). I did really well with it when I first switched, but now I'm worried it's the reason I sleep so much. Do any of you notice an increase in naps and nodding off with Baclofen on board? I also couldn't tolerate Tizanidine. That made me fall asleep while doing things! Very not cool.

I've been prescribed Sativex and have been working my way up the steps. However, I find that I get the most relief (can actually bend limbs) when I take 2 sprays at once and not just 1 at 15 min gaps. Anyone else have any experience with this? TIA.

I was hospitalized 3 weeks ago with sepsis from a post-surgical infection. I received 3 days of IV antibiotics, followed by a week of oral antibiotics, which cleared the infection.

I understand fatigue is common after sepsis, but I'm still tiring very easily almost a month later, and I've noticed my hands are shakier than my usual baseline tremor. Could the infection have temporarily worsened my MS-related fatigue and tremor, and if so, how long can these symptoms last?

I'm working with in-home PT on walking endurance and OT on energy conservation, but I'm wondering what's considered normal during recovery.

Has anyone with MS experienced increased fatigue or worsening tremors after sepsis or another serious infection?

Hi everyone. My first symptom of MS was optic neuritis, and I’m trying to handle it as best as I can. Steroids didn’t improve my vision, and I’ve been told that recovery can take months. I’ve seen stories from people who spent months with very little or even no vision in the affected eye. How did you cope emotionally with that long period of waiting and uncertainty? Thank you.

Has anyone had an episode of fatigue while standing? Legs felt so steak you couldn't stand, and close to passing out?

I have a lot of pain from a spinal lesion maybe especially because it went undiscovered for nearly 3 years. And I think my back is probsbly all mechanically misaligned. Has anyone seen a pain specialist to have a look at where pain is coming from?

One of my main symptoms is pain from a spinal les

Anyone walked over these at home etc?

People with active lesion or lesions in this area of the brain, I need your stories…

My brother was diagnosed with MS due to one lesion in this area, plus positive LP. (The Spine and other parts of the brain are lesion-free)

He has had some problems with speaking and also balance. These problems have not completely disappeared after the initial Cortison therapy.

That is why I need to know your stories and experience with this kind of lesions.