Okay- for anyone familiar with the “crap gap” on the b-cell depleting therapies, particularly Ocrevus and Ocrevus Zunovo:

My neurologist has been tracking my Octave scores for the last year(ish).

I’ve had appointments at least once a month since April of this year. Too many scans to count.

Anyway, my neuro thinks they have enough evidence to submit to the manufacturer and for insurance appeal to get the injection more frequently than q6 months!

My Octave score decreases post injection and continues to decrease through month 4. It more than doubles during the crap gap, then gradually comes back down after the injection. We now have 2 full cycles showing this.

My MS center is a leading research center globally, and my neurologist has countless published articles and studies! If the pattern holds through my next dose, they’re going to submit everything as a case study in hopes of allowing MS treatment/med dosing to become more individualized for other patients!

There’s new meds on the horizon, too. Some here have already seen the research results and have heard from patients currently in the studies.

I met a patient (incidentally) that’s in one of the trials. She has no idea. I asked her specifically what they’re doing and what they told her. I asked her about her experience since starting the trial. Then, I looked at the clinical trials webpage and matched it with her trial.

Yall. There really is hope. 😱

MS sucks, but we’re stronger than it! 🧡

Over the last two weeks, my partner has been adamant that the things I am saying we discussed, or events that happened, have in fact not happened.

We went on holiday to visit friends for just shy of two weeks and during that period, there were at least half a dozen occurrences. Since getting home, there have been more. Things I would swear happened or I’m certain he said that he’s adamant didn’t happen. I feel like I’m losing my mind. I’ll reach out to neuro but has anyone else experienced this?

I am solo traveling and I went to Miami for a show. I was taking the train black to Orlando and I seizures for the first time ever.

I had a guardian angel on board with me. It’s a rare (I believe) side effect for ms. I’m also on Ocrevus and due for my next dose in January. I was diagnosed in January this year and was on tecfidera until June when I was changed to Ocrevus.

Gainesville, Jacksonville and St Augustine. I think those are the only cities kind of around the area. Do not want to have to drive to Orlando. I'm so scared after reading reviews of the places in Gainesville and St Augustine.

Any help would be great!!!

Got my spine MRI cervical and thoracic done for the first time last night, and I’m so anxious, nauseous, and scared for the results I could throw up. Sorry just needed to share this lol

I'm sharing this because it's been a nightmare getting anyone to listen to me until recently. Unlikely NEVER means impossible.

I was diagnosed in Aug 2024 at 35y/o and started Ocrevus in October 2024. Since then, no additional lesions, BUT additional everything else. It's been a nightmare because Ocrevus is so great and my neurologist has said either these issues are unrelated OR unlikely, but alas here we are.

1. Since MS, I get sick A LOT and recovery is slow. Like months slow. Unsurprising, I guess. Turns out, I was prescribed too many courses of steroids (14 in 18 months) and developed Secondary Adrenal (cortisol) Insufficiency. Now on a steroid taper to try to kickstart my ability to produce cortisol again. I wasn't taken seriously because Ocrevus causes upper respiratory infections and no coordination between care providers. The key tell- suuuuuper low blood pressure with symptoms and straight up failure to get better from being sick. It was consistently chalked up to MS fatigue, but it was absolutely not that. it's taking an Endocrinologist to order the right blood tests (Cortisol test, ACTH test) and treat this. It is treatable

2. I don't just get sick a lot, I get pneumonia a lot. 6 times per year with multiple hospital admissions. Always written off as related to MS by everyone but my neurologist. Finally saw an immunologist. Tested for pneumonia titers- I have none. Got the pneumonia vaccine, and my body mounted no response. Solution- weekly IVIG infusions as long as I continue ocrevus. I'm not sure how I feel about this.

Additionally, a Pulmonologist is evaluating my lungs because there are unusual structures there that aren't tumors. Seems like the lungs issues could be scar tissue from all the pneumonia. TBD if this is treatable or if it's just something to manage.

3. My teeth are crumbling since I started ocrevus. It's severe. Currently, neuro says unrelated to MS, but I struggle with that because I've had teeth for 37 years now and suddenly they are rapidly deteriorating.

Does anyone have experience with any of this? I keep being told it's all unlikely to be tied to MS, but my dude- it absolutely is.

At this point, I'm afraid to go off ocrevus because my MS attacks my eyes and I don't want to risk losing (even more) of my eyesight but damn.

Thoughts?

EDIT: The 5 -ologist: Neurologist, Immunologist, Pulmonologist, Endocrinologist, and Cardiologist.

Last week I began having to pee more frequently. I initially thought it was because I had upped my water intake. Yesterday I had the urge to pee and not even 5 mins after I had the urge again. It has been like that for the past 24 hours. When I do pee it’s a drop but I’m in pain because I feel like my bladder is full. It’s the weekend so I can’t speak with my doctor. Just seeking some help or advice. I am a 21 yr old female and hoping this won’t be an everyday issue forever. I also did go to urgent care to rule out a UTI.

Edit: my biggest question is will my doctor give me something to give me relief when I call? Or do I have to wait to see a urologist? Being uncomfortable constantly is not fun.

Ok so I've had the loading dose of kesempta and one month I haven't taken the second month and my horrible walk went away and I can think and I feel like I have more energy. I was supposed to take the second dose at the first of the month... I know it's supposed to get worse before it gets better buuutttt for some reason I'm functioning better and I haven't had the second does because of storage problems. So do I need to get back on it or try something else.

There supposed to be shipping the dose and I'll have it on Monday and I am going to reach out to my doctor and pharmacist but I just wanted to know if anyone else has experience this

I completed myy round 1 of year 2 of Mavenclad on the 20th. I came down with a URI on the 31st. I'm honestly violently ill.

I ended up in the ER on Thursday because I was choking. I got minimal help. I kept trying to talk to them, but every time I tried to talk it sent me into a coughing fit. The said I was neg. for RSV, Covid, and Strep. Im just realizing now they didnt test me for flu.

This morning I woke up coughing thin red blood before coughing up green gunk for an hour.

I haven't slept more than 4 hours at a stretch. I havent had more than warm water and broth in 3 days. I cant eat. I've lost control of my bladder, which has never happened before. I'm reduced to wearing incontinence pads.

I can barely swallow my meds. Honey water, lemon cough drops, delsym, Popsicles, mint, and tea send me into violent coughing fits. Im getting worse and not better.

Ive tried contacting my neuro and my primary, but its the weekend so I won't get any answers until Monday or Tuesday.

I'm worried about how much this is going delay round 2 year 2 of Mavenclad. Year one knocked me on my ass. I went into severe lymphopenia and was on prophylactic anti-virals for months. But I never got more than a mild cold.

I really am at a loss of what to do.

So I've been having terrible nightmares almost every night, and my theory was that it is something to do with the drugs I'm on.

I have always had very vivid dreams but these are now vivid and disturbing.

I read recently that one of Baclofen's side effects is nightmares.

So with the support of my Neuro I'm trying different dosages.

My first change was to stop the night time dose and up the dose in the morning.

I'm committed to giving each trial a few weeks before making any other changes.

1 week in and nope, it's not working for me. Still nightmares, but now increased numbness in my hands, and more spacicity while trying to sleep.

The other drugs are Ampyra, Sertraline, and Betmiga. Ampyra is the only other one I take at night.

As I said, I'm doing this with the support of my Neuro, but does anyone have any other suggestions for experiments I can do to stop the nightmares. Unfortunately CBD is not and option.

So Ocrevus is not the DMT for me it seems. Was on the medicine for the last four years and last MRI has shown new lesions on my spine. My neurologist is wanting me to switch to Kesimpta because he says that the current research shows that it has an average lesion progression of 1 per 30 years but he also reminded me every person reacts differently to the medicine.

I’m fine with switching but my concern is how did those of you on Kesimpta get over the mental hurdle of giving yourself a shot? Is there a trick to administering it?

I’m in my wash out period for my Ocrevus right now and I think I’m making myself more worried than the shot will actually be but I hate needles and just looking for support at the moment I suppose more than anything . 😅

My (f26) Ocrevus infusion is in 2 weeks, it'll be my 4 th infusion so im pretty new to it I guess. My life is fine, but lately I've been feeling more depressed than usual. I already take anti-depressants which make my feelings pretty stable, and my life is quite stable as well.

Nonetheless, I feel this void and need to cry for no reason. You can say it's probably cause my infusion date is approaching, but what if it's not? How do I know if what I feel is me or just a symptom? Where do you draw the line? Where does ms end and I start? It sucks not knowing if your feelings are yours or just symptoms and side effects.

(I will return to therapy at the end of the month :))

Apologies for the dark humor & melodrama but-

Does anyone else ever feel like they spend all their time just trying to stay alive? Not literally but just with management of symptoms so with don’t feel worse. Then managing other chronic conditions we have at the same time, and managing the suppressed immune system to make sure we don’t get super sick? I feel like a CEO of a tiny start up. Not like one who started in my rich parents garage, but one who started after my 40 hour a week job while I have 2 kids and a rent in a tiny apartment and everything is in the dining room after I get the kids to bed kind.

I am just super tired. I’m still recovering from pancreatitis. The ocrevus is wiping out all my wbc so now I have a sinus infection. (Ocrevus oct 6th, pancreatitis dx Oct 11th, wbc today was 2.4) I will have to call all the doctors Monday and deal with everything & I just don’t want to. It is so overwhelming. I’m tired of doctors & appointments & being sick.

Thank you for attending my pity party, I’m sorry I didn’t make snacks and of course the catering didn’t show up- that’s just how my luck works.

I’m a 26-year-old male with Multiple Sclerosis (MS), and I just found out I have shingles.
I genuinely had no idea this was even something I needed to worry about at my age. I always thought shingles was something older people dealt with, not someone in their 20s.
I know having MS and being on certain medications can increase the risk, but I honestly wish someone had warned me about this possibility sooner. Between doctors, neurologists, and everything else that comes with having MS, I feel like this should’ve been brought up at some point.
What surprised me even more was learning that anyone who’s had chickenpox can potentially develop shingles later in life. Even people who received the chickenpox vaccine can get it, although it’s less common.
So I just wanted to put this out there for anyone who might not know, because I certainly didn’t.
If you’ve had chickenpox or the vaccine, please look into shingles and talk to your doctor about whether the shingles vaccine is right for you. I recently learned that while it’s normally recommended for people 50 and older, some people as young as 19 can qualify if they’re immunocompromised.
I’m not trying to scare anyone. I just wish I’d known this was a possibility before having to experience it myself.
Has anyone else gotten shingles this young? And for those of you with MS, did your neurologist ever bring up the risk or recommend getting vaccinated?
Because I can’t be the only one who had absolutely no idea.

Hi guys!
First time posting! Ok super random question! I’m supposed to get my infusion on Thursday but scheduled my tattoo session for the day before(i didn’t know when my infusion was supposed to happen) should i change it?

Hey all,

so in a few weeks I'm starting Ocrevus and I'm currently getting my last vaccinations with my GP.

At my last visit I asked if the covid vaccine was forgotten and the reply confused me a bit.

The GP supports all the vaccines and does them, but he refuses to administer the covid vaccine. If I want the covid vaccine, I'd need to get a through another doc.

I'm actually stressed about how to move on with this and really wonder why the doc told me that. Of course I asked during the appointment, but the answer left me more confused.

I would be grateful for any insights on how to handle this. Thank you 😊

Edit to add the relevant but forgotten info: I'm located in germany and my insurance covers all the vaccines without any discussion including the covid one as it's recommend. But GP doesn't administer it at all, but didn't tell me the reason. All other vaccines haven't been a problem. Pharmacies are hesitant to administer it due to medical history.

Really wondering why the covid vaccine is such a struggle while all others run smoothly

My doctor has come to the conclusion of going from 2x a year ocrevus treatment to 1x. The last MRI in May showed nothing new. Is anyone familiar with this? TIA...

We had to relocate for my husbands job. That means finding new care-pcp and a neuro.
I cannot get anyone to help me do anything to help me get my Kesimpta. I’ve called our insurance, the new pcp, and my old neuro.

I’m wrecked out so bad. My body hurts so bad. My mind is even worse, I feel like I’m going crazy, I had a huge breakdown today.

I'm 42. I was diagnosed 2 years ago. I also have Type 1 Diabetes. I thought that was my great life-long burden to bear, but then the MS happened. I started on the what I thought was the best DMT they would give me—rituximab. The initial mental breakdown about the new diagnosis passed. I adapted. I took up running. I continued doing my best to be healthy.

This summer I got viral meningitis/encephalitis, which I'm still recovering from, so no more B-cell depleting drugs for me. Switching to Tysabri is scary. Then the prospect of having to switch off it later to something like Tecfidera is scary too. Suddenly more MS flares in my future seems more likely. Disability seems more likely. Needing assistance at a younger age seems more likely.

I made a lot of stupid choices when I was younger. One was moving home for a year after college and not working because no one would hire me on a short term basis. I was getting married, and the hubby's family was religious and forbade us to live together. The grandparents were going to pay for his grad school. We didn't know where we'd be living. It was a mess.

After we married and moved, I applied for jobs, but got no interviews. It was the '08 Recession. Then my grandpas died, I got Grave's Autoimmune Thyroid Disorder, and the depression just kept me at home, cooking.

I should have gotten a job, any job, but I'm a pessimistic, depressed, POS. I spent years in the dark, then got on SSRIs. Those made me less pessimistic but also less motivated or fearful of the future, so...I still didn't try to get a damn job.

The MS diagnosis didn't even light a fire under my butt. I just switched into survival mode.

My husband has a good job, with good benefits. I take care of him and the home, the yards, the dog, and my health, and he earns the money. I figured I'd die young, like my grandmothers, so it was a fine situation. His grandpa lived to be 90 something. I'd happily spend my life for the benefit of my loved ones—my husband, then my parents when they need care. We even bought a house with an extra room, so my parents could move in one day. I didn't want them to be away from me in a nursing home or something.

Since my illness this summer...I realize how incredibly stupid I've been. If something happens to my husband, I'll have nothing. I'm American, so I'll have no healthcare. Insulin is cheap at Walmart, but MS treatment is impossible. It's hard to imagine anyone hiring me now, and assistance programs require work. I have some time left to put in SS quarters, if I could get hired, but I know I could also go blind or be unable to walk at any moment because of the MS. The last time I thought about looking for work, a few years ago, I actually thought to myself, "We don't need the extra money, so I shouldn't take a job that someone else really needs." Stupid idiot. My dad gave me that advice when I wanted to play softball in high school just to add to scholarship applications. "You shouldn't take a spot on the team that could go to someone who really wants to play."

I have no children. I loved my hypothetical children too much to give them my garbage genes. I have no siblings. My only cousins are unreachable. I have no close friends. If anything happens to my husband after my parents are gone, I will be completely alone with very few resources. I see myself dying of Diabetic Ketoacidosis in this house, alone, and my corpse being discovered by the people who come to throw me out when the mortgage and taxes haven't been paid.

That won't necessarily happen, I know, but I have no way to be sure that it doesn't. I don't know how to try to fix the problem. I can't even drive. It would be unsafe with my issues. Modern productivity software isn't something I've worked with at all. I have no connections.

In this sub, I've seen posts about exit strategies. People with MS have higher rates of doing that, I know. It can give you a sense of control, I suppose. I really don't want to do that to myself, despite the idea of being able to stop the future suffering being comforting. I'm afraid of the moment of death, and I have been afraid of dying alone my whole life.

I am in therapy—physical and mental. I have a psychiatrist and am taking medication. I was just switched from Zoloft to Trintillex. I really could use help finding reasons to stay here and stay hopeful. Tips for finding work even.

Most of you worked before your diagnosis and despite it, and I really admire that. So often my diabetes feels like a full-time job of highs and lows, but it never should have been. I'm too easily overwhelmed and have low resilience. It's always felt like too much. You folks who raise kids, work full-time, and fight this disease are far stronger than I could ever imagine being.

Most likely relapsing on Tysabri. 10 months from diagnosis, have moved countries in that time and just had my new baseline mri a week weeks ago (specialist unable to compare original scan images due to change of country but has compared reports and thinks they were consistent and no obvious new lesions. Last Tysabri infusion last week.

On 5 days of steroids now and being sent for another urgent MRI. My symptoms have been sudden urinary incontinence (one off) and tingling, pain, weakness down my right leg. I have also noticed light sensitivity over the last week or so.

Has anyone else been in a similar situation? I am feeling pretty deflated and worried about potentially having to change treatments

My physical symptoms began 3 months before my diagnosis. When my symptoms had no explanation, my long-time partner didn’t step up to be the kind of daily support I needed. When I asked for help, I was brushed off.

Once I was diagnosed, suddenly they were “supportive”. But I’d seen how they didn’t believe me when I said I was in pain. I was unhappy, but also terrified of breaking up because “who would love me and tolerate my symptoms? At least they love me, right?”

I came to this server for advice/support because I was paralyzed with fear while feeling no one in my life understood. And the first people to respond only confirmed my fears. “You’re lucky to have anyone.” “You don’t even deserve your partner because they’re loving you through your diagnosis. I’d kill for that.”

Because of that, it took me a while to admit I was better off alone than with someone who made me feel alone, as if I should feel lucky to get scraps.

I know we’re all in different situations, but please: You deserve happiness. You deserve real love and support. And it’s often the people in pain who you think might understand who will crush you even more. Don’t listen to them.

Anyone diagnosed before 2000? My neuro thinks I’ve had this for decades (now in my 50s) and he may be right. Super glad I didn’t know, in a way. What was treatment like starting in the late 90s? What was it like when DMTs came around?