r/MultipleSclerosis

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.

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?

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 there, this may be a weird post but just want to know if anyone has had a similar experience even though I know it can be rare.

At age 25F I woke up paralyzed and numb in the left side of my body. They did a CT and the an MRI and found a 4cm lesion on my brain. Because of my family history they knew MS was a possibility. I got on a DMT and haven’t had any new lesions since. Just the one tumefactive lesion. But I never had a brain biopsy.

Recently, I had twins. My boy is perfect, meeting all his milestones and growing well. My girl, who is also perfect to me, is not. They both were born prematurely but my boy has done well with his time outside the womb. My girl hasn’t gotten the hang of eating and has low tone in her neck, jaw and trunk. Her brain MRI and ultrasound were all normal. I saw a geneticist and they suspect she has a genetic disease. We’re doing testing.

Now here’s the strange part. The geneticist asked me if I was sure I have MS. I said I think so, my oligalcolonl bands were pointing towards MS but again I never had a brain biopsy. Just MRIs and lumbar punctures. What he is suggesting based off my family history of MS, hypertrophic cardiomyopathy, my diabetes, my WPW and that I’ve had no new lesions, is that I have a mitochondrial disease. I have very little understanding of mitochondria diseases and the geneticist is going to talk with my neurologist.

I’m just trying to find anyone with a similar story that might have some insight. Whether that be for my daughter’s health or mine, any thoughts you might want to share are appreciated.

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.

TLDR: I’ve had MS for 6 years, and being tested for RA

I (38F) have been diagnosed with MS since 2020. It started with optic neuritis and I was completely blind in one eye for 3 straight months. My vision partially restored, but since the ON, my MS in the last 6 years has been very active. I have mobility issues, foot drop on my left leg, spasticity, extreme pain all over. All the bs MS can throw at someone, I’ve had at some point throughout my time with MS. Bladder and breathing issues have even been a problem and I’ve been to just about every specialist for each symptom that arises.

I’ve also been on 5 DMTs in the past 6 years, and so far my longest has been Kisempta. I’ve been on K for almost 3 years, and it’s kept me the most stable without the brutal side effects (which is why I’ve had to find the right med). As much as I still suffer with MS symptoms, the last year has been more manageable. That was until about a month ago.

I’ve had joint pain before over the years, I was a barber for a long time and I had bilateral carpal tunnel surgery 8 years ago. This new joint pain in my hands however, is unlike anything I’ve experienced before. It started with my thumb and pinky small joints, just swollen, red and tender. Over the last 2 weeks now, it’s my entire right hand spread to my left thumb and fingers as well. My knuckles are red and swollen and so stiff. There’s also weakness and I can hardly lift anything without strain and pain. I see my neurologist next month, but I went and saw my GP last week since the pain and stiffness has gotten so bad. He knows about my MS and said it could be a symptom, but he asked me about any rheumatoid family history. I’m not close with any extended family to dig into any history, and my grandma had arthritis as she got much older. My heart sank when he brought up rheumatoid arthritis.

They ran a ton of blood work, and I’ll get results this week. Even now I’m in so much pain but I’ve always blamed MS. Has anyone else been diagnosed with rheumatoid arthritis on top of MS? I did some digging and it does list joint pain as a side effect of Kisempta. I’m also changing up my diet a bit to eliminate foods that irritate the joints. But what would treatment even look like for someone with RA and MS? I am far more terrified of how fast MS has taken so much from me that I’d rather stay treating my MS with the best I can. But now with this join pain, especially in my most dominant hand, what in the actual fresh hell is going on?! I’m sick of this shit and I need to know if anyone else has gone through this. Thanks

Good morning to my MS buddies. The only people that understand what we live with.

I saw a new Neurologist because his bio states - “...has an interest and expertise in Headache disorders, Migraines and Multiple Sclerosis.”

I mention that because he is sending me to other Drs to determine if issues I'm having are caused by MS.

Told him about the sudden urgency I feel to urinate. Sometimes I can't empty my bladder which requires many trips to the bathroom.

He said I'm having internal and external urethral sphincter spasms & temporarily put me on Oxybutynin CI 5mgs. He said I need to see a Urologist to determine if it's being caused by MS.

A few yrs ago I had optic neuritis. Now I have black dots in the same eye. These are different from the floaters everyone gets now & then because they are black dots. I keep thinking bugs are flying around me. They don't affect my eyesight but are almost constant & I have had them for 4 months. When I told my Neuro about it he said see an eye Dr.

My main question for you all is - has anyone seen a urologist for bladder issues only to find out it's MS & the Neuro gave you the correct Rx? I don't want to spend time & money going to another Dr that's not going to do anything different.

Thanks everyone. Have a great day - if that's possible with this awful disease.

Anyone walked over these at home etc?

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??

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?

I’m looking for someone who has all 3 like me. I’m having a hard time with terrible spasms in my esophagus and stomach. They’re like events. I get shaky and then down for the count for 3 days. I am not supposed to take these meds and should have never been prescribed them as it makes my retention worse. I’m trying to find a solution to get ahead of these attacks but no doctors seem to know how to help me. Thanks for taking the time to read. You’re all warriors 🧡🧡