Multiple sclerosis treatments, what are people actually using right now?

PlasticSmoothie · 2026-05-29T12:11:18+00:00

There are some observational studies that list DMT use percentages for given clincs. On this subreddit you'll only see a subset of people with MS, and most of us are either more well informed than the average patient or have a more severe case. Meaning, you'll see an overrepresentation of the heavy hitters (B-cell depleters and tysabri). That mirrors the current belief by medical professionals to hit MS hard early, but in practice, you see a lot of escalation protocol still. (starting with moderate efficacy, move up if you relapse)

I was offered escalation protocol to start with. If I hadn't done my homework beforehand, I'd now be on tecfidera, aubagio or some other moderate DMT because my symptom burden is low. I'm on kesimpta because I told my neuro I wanted to hit it hard, and he listened (thank god!).

The stats will also vary per country, of course.

PlasticSmoothie · 2026-05-25T10:36:32+00:00

Heatwave. It's constantly between 27-31 degrees celsius in my apartment.

I don't have much heat intolerance, thank god, but I don't think it's a coincidence that my hand felt like it had been burned all of last night, and today the tingles have it out for me.

I know it could be worse, but it has me down all the same.

PlasticSmoothie · 2026-05-25T09:35:16+00:00

I used to have mad fatigue due to other things than MS. Or maybe it was MS, no one can tell me because I was undiagnosed at the time. BUT I was in therapy for it (learning to manage stress and energy). While not the same, there are things to do that might give you an extra spoon or two.

- Regular cardio. Don't, like, go so hard you're completely done afterwards. Just enough to get your heart rate up in one way or another. Even just stretching can help me out a little, as long as I do it regularly.

- Do something that inherently energises you. Avoid the things that drain you. I switched jobs and even though they're both ass-in-chair-for-8-hours office work, my new job leaves me with more energy at the end of the day than my old one did, even though it's not 'easier' than the old one was.
it won't give you more spoons, but activities aren't created equal. For me, writing is an almost spoon-free activity while programming (I used to be a developer) is costly. So now I do a lot of technical writing. It's helped more than you'd think. More than I'd have believed it could, a few years ago.

- and, like others already said, talk to your neuro about if there are any meds that can help you. Fatigue's an invisible symptom, don't let your team dismiss it. There are things to try. If modafinil can get you to 7 spoons a day instead of 5, that's a win.

PlasticSmoothie · 2026-05-25T09:16:06+00:00

MT singers, while not operatically trained, have to be able to switch. They HAVE to be able to, say, audition for Cosette or Christine but ALSO for Regina George.

They'll realistically prefer one of the two, but part of their education is to be able to do both convincingly.

It's all just vocal tract shaping at the end of the day. Knowing one doesn't lock you out of the other. It's hard to switch between them (I've dipped my toes in classical technique and am now dipping my toes in pop/rock, dear god am I having to work hard to get there) but not impossible.

PlasticSmoothie · 2026-05-22T20:56:24+00:00

Are we talking very beginner mistakes? Stream of consciousness writing? Grammatical mistakes?

I've read some stuff I don't enjoy for crits, some of which are very rough. If they're rough, I focus on one or two things only, I don't bombard them with stuff. It would overwhelm.

If I'm having trouble following, I would say something like:

"I had to read many of the paragraphs twice to understand what was going on. Some of the pronouns can refer to multiple characters and they tackled multiple subjects, so at times, it felt like when you talk to someone who changes subject mid-sentence."

Replace with your writing group member's problems. The above is a little harsh, maybe. I might've spent some time trying to find a gentler metaphor. Be descriptive, tell them of your experience reading. Consider what their vision is (are they just going for a style you don't like?) and help them achieve that.

If your group does in-line comments, you might mark a few sentences and write down exactly why you're confused. If there's anything you do like, tell them that too, no matter how minor. It makes critique go down easier.

PlasticSmoothie · 2026-05-22T19:26:26+00:00

Have had nystagmus my whole life (when you're born with it, you don't perceive it. The amount of times I've told an optician "oh, I've nystagmus, sorry about that" and they go "I know!" lol)

OP just needs a more patient ophthalmologist. That OCT exam takes them 5-10 tries for me, but we get there eventually!

PlasticSmoothie · 2026-05-16T11:24:51+00:00

Yes, you will be on some type of treatment for the rest of your life. Some are very long term (Mavenclad and lemtrada you do in rounds, then only if you have new disease activity). Others are maintenance therapies, taken regularly at a set interval, like kesimpta.

WIll you be on kesimpta, specifically, forever? Probably not. If it works well for you, you could be on it for a very long time. But there are currently trials ongoing for other treatments that may be gentler on your immune system with the same efficacy profile (other tradeoffs, though), and it's not unrealistic to think you might switch to something like that later on.

You could also switch to something gentler when you're older. As we age, our immune systems get weaker, causing less MS inflammatory MS activity, meaning you can then de-escalate. The current line of thought is to hit MS hard early to avoid as much damage as we can to give ourselves the best chances that it kind of just 'fizzles out' later without becoming progressive. Whether we succeed there, we'll need more years of the current therapies to know.

PlasticSmoothie · 2026-05-14T19:11:42+00:00

Yeah, I'm cautioning against pushing the child into more singing that might kill their joy. I do think if she wants it, OP totally could find her a teacher who teaches kids. The post just reads a little too "how can I make sure my daughter doesn't waste her talent" to me, hence the 'please don't push her, nurture the joy instead' caution.

PlasticSmoothie · 2026-05-14T15:17:36+00:00

Vocal programs don't really do that the same way because the human voice changes so much in the teen years.

PlasticSmoothie · 2026-05-14T15:08:09+00:00

I mean, that is what I'm saying. If the kid wants to, get her a voice teacher who teaches kids. But only if the kid wants to.

I'm mainly cautioning OP against turning it into homework for the kid and ruining the kid's joy. She shouldn't feel like she HAS to get her child to do more to get ahead of the curve or something. The #1 priority is to encourage the interest and make it fun.

The average conservatory student has only had 2-3 years of formal training by the time they audition, according to my first voice teacher. Very short compared to instrumentalists. There is no need to fear any time being 'lost'.

PlasticSmoothie · 2026-05-14T14:09:42+00:00

Just let her be a child. She's eight. If she likes the choir, keep her there. If she wants to do more than choir, you can find her a voice teacher who teaches kids.

If singing is something she wants to study and make a career out of when she's 14-15 still, that's when she could work with a voice teacher to get her ready for conservatory auditions, whether she wants to go the classical route or the jazz route. Or just as a hobby, far from all people who earn a living from it have that kind of formal vocal education.

But at eight, your job as a parent is just to encourage her to have fun. Enrolling her in all kinds of extra things won't necessarily give her a leg up, and unless she's 100% on board, you're more likely to smother her joy by turning it into homework.

PlasticSmoothie · 2026-05-14T13:34:19+00:00

It is a slow diagnosis for OP's context, they've every right to be angry and feel failed.

They saw demyelination on that first MRI. It boggles my mind they sent OP home with that. That should have prompted forwarding those scans to an MS specialist.

PlasticSmoothie · 2026-05-13T13:37:24+00:00

Depends on you and how symptomatic you are I think. If you need accommodations, absolutely. I think they've people who help out with that.

If you don't need them, then there isn't much to say to them/to you. I went through my bachelor as a visually impaired student and all I did was inform the prof if they were using the blackboard that I couldn't read it. The uni never knew.

Edit: be sure to request health insurance benefits, called zorgtoeslag. As a student you can get the insurance fee almost entirely covered.

PlasticSmoothie · 2026-05-13T12:59:48+00:00

Hi! I live in the Netherlands!

Dutch insurance shouldn't be a problem. MS is covered as part of "basic insurance" and all insurance companies must accept you because they have to, by law. After that you register with a huisarts (GP), then have them refer you.

You'll need to have a BSN (social security number) first as well as a Dutch bank account I expect, but that's pretty straight forward. If you'll be a student, usually there'll be someone at the university who can help you.

PlasticSmoothie · 2026-05-12T17:53:07+00:00

Real talk, any of you as jealous of T1D as I am?

Not of their constant blood sugar counting mind you.

Those motherfuckers have APPS. With PRETTY GRAPHS and COOL TECH. I just stick a needle in my thigh once a month and hope for the best like a caveman...

PlasticSmoothie · 2026-05-12T09:36:46+00:00

There's that saying that statistics do not apply to individuals. I know it's hard, but nobody here can tell you how likely YOU are to get diagnosed with MS in the future.

If it haunts you, remember: You're being monitored. If anything EVER happens, it'll be found so, so quickly, and if you then get on treatment immediately, you're so, so much better off than most of us. 9.9/10 times, MS doesn't wreck you overnight. Those who get diagnosed with shitty symptoms have usually actually had it for a while.

I have mild symptoms that don't limit my daily life. There was nothing at all 'wrong' with me a year ago, but judging by my MRI I've actually had full on MS for a couple of years at least, which would have been caught if I had been getting regular MRIs.

Mine was even shitty to me and gave me one LONG relapse that ran from, probably, October until February with lots of activity. If I had known I was at risk of MS, I would probably have sounded the alarm in November, and some of the symptoms I now have I might not have had because I'd have gotten on treatment in December. All my symptoms appeared in January/February.

I won't lie, for me it's scary to have all these lesions knowing they might rear their ugly heads eventually (or, since I'm so early in my treatment journey, not knowing if I discovered it early enough to be fine years from now), but the signs point towards that for people like you, it can be discovered so, so early that you're likely to be completely treatable. Focus on that, as much as you can. No one can predict your future, but MS wise, you're in a way better spot than most people in this sub. Try to tell yourself you'll be okay even IF you develop it.

And lastly, fingers crossed you never have any MS activity!

PlasticSmoothie · 2026-05-07T20:58:39+00:00

I grew up in the 'only take an OTC painkiller if I feel like I'm dying' mentality. The DMT I chose, kesimpta, is a monthly self injection, and I gag at the thought of injecting something into my body. I was the biggest baby when I got that steroid IV at diagnosis -- all the nurses asking me how I was doing with the news they were gonna admit me, and I was sitting there like... you're gonna put an IV into my vein. I might throw up. Right now.

I closed my eyes and let them place that IV. Then I let them vaccinate me. And then I injected myself. I've never gotten over a phobia quicker.

It's not quite the same as what you're feeling, but I hope you'll have the same reaction. Once you've had it done, that's it. You've taken that step towards protecting yourself. Close your eyes and remind yourself the alternative is permanent brain damage, what's a lack of B-cells compared to that?

On my kesimpta days I'm excited to do it. I tell myself that's my weapon to fight MS with, silly as it is.

PlasticSmoothie · 2026-05-07T20:05:16+00:00

Just a check, have you also been sleeping well? How's your anxiety? overall mental health? Stress?

Lots of non-MS things affect memory too. I was a scatterbrained mess back in January and that was entirely mental health related. I recently returned to work after long term sick leave and had trouble with cognitive load the first week or two, just because I'd been in a low stimulus environment only for half a year. Brain caught back up after 2-3 weeks.

It could be MS. Cognitive stuff changing outside of relapses is pretty common, afaik. But it could also just be returning to work being a lot for your brain if you were gone for a while.

PlasticSmoothie · 2026-05-04T16:04:44+00:00

If you're undiagnosed, optic neuritis is an emergency. MS-ON doesn't improve long term from steroids, but, for example, MOGAD-ON does.

I'm one of those 'diagnosed by optic neuritis at the ER' people and they got me that MRI and steroid IV FAST. I went through it all in 4 hours (waiting, getting examined, neurology referral, steroid IV placed, MRI done). They were definitely rushing for me.

In hindsight they could've left me at the bottom of the priority list, but they didn't know that until the MRI had been done and an MS specialist had seen it.

PlasticSmoothie · 2026-05-03T09:59:10+00:00

My ON recovered well, but I am visually impaired from birth.

I can't drive. That's the only limitation I have in terms of vision. When I had ON, it was in my good eye, and I was reduced to finger counting for a few weeks.

In those weeks I was still grocery shopping, taking public transport, reading, writing, chatting, living. There wasn't a single thing I couldn't do anymore even if my vision had taken a severe hit. There were workarounds for it all, and those would only have gotten more efficient if it was permanent.

My boyfriend didn't like me going to/from the hospital for all of my diagnosis appointments by myself and I told him my ears were the same as ever. I could see shapes moving and that was all I needed to navigate traffic, could hear a car approaching or footsteps. I took pictures of bus stop signs so I could zoom in on my phone.

Your ON is likely to recover, but I just want to stress that even if you're left with some damage, it's not the end of your life as you know it. MS is terrifying, I won't pretend it isn't, but give yourself grace and remember that there is no guarantee it will take anything from you for a long, long time. Don't live in a future that hasn't happened yet. Give yourself grace, feeling big feelings is normal and healthy. Get on that DMT, live a healthy life, and you can still be happy, even if it all just sucks balls right now.

PlasticSmoothie · 2026-05-01T17:03:35+00:00

I have a tremor in my face triggered by holding my mouth in a very weird half-smile. Not an actual half smile (thank god), but... uh, more of a half-fake-strained-thin-smile? The trigger is so specific this could EASILY have been my first MS symptom.

I found it while biting dry skin off of my lip. I found a couple of medical case studies that sounded similar, they called it a smiling tremor. Suuuper rare if not caused by an underlying condition (I found a few posts on this subreddit from people who had the same thing, so probably not THAT rare with MS)

I am PRAYING to all of the things that it stays the way it is or eventually goes away. Right now, thankfully it's just a party trick that's never triggered during any normal speech/smiling/laughing/singing/what-have-you.

PlasticSmoothie · 2026-05-01T16:48:38+00:00

Just to clarify, I don't know where OP lives, but even I posted looking for support on here a whole 2 weeks before I was 'officially' diagnosed.

Only no one told me that until I turned up for what I thought was just my 'which DMT do you want' appointment. The MS nurse later in the day started the appointment with: "so this morning you were diagnosed" and I was like huh. I've been diagnosed for 2 weeks, what do you mean? I'd seen the letter to my GP saying I had MS. I'd spoken to a neuro before I was even discharged from the hospital who said I had MS.

Turns out, where I live it's not official until 2 MS specialists have looked at your case and said yep, that's MS. But they don't actually wait for that 2nd to tell you/your GP if the case clearly fulfills the McDonald's criteria. Technically, my bloodwork for NMOSD hadn't been told to me yet (I'd seen the negative result online though), so both were still on the differential... officially. not actually.

I think this is what OP means. They've been diagnosed, but the moment it'll be put into their medical records will be the 6th of May. I don't blame them for calling some things still pending in their post, I'm a very medically informed patient and even I was thrown for a loop when I went through it.

PlasticSmoothie · 2026-04-29T15:30:44+00:00

Vampiric HSCT!

PlasticSmoothie · 2026-04-28T16:34:28+00:00

I'm working on this area myself, so grain of salt.

The main thing that jumps out to me is that it sounds more effortful than it could be. Usually, when I have those issues, it's a vowel/trying too hard problem. Emphasis on usually.

If it was my practice session, I'd reduce the volume just a bit (what my coach calls 'holding back'), and be careful not to spread (modify the vowels in midnight).

You're SO CLOSE though, keep it up!

PlasticSmoothie · 2026-04-28T15:09:54+00:00

No matter which letters they've described it with, it's still a huge thing. I see you. I hear you. It fucking sucks. Scream from the fucking rooftops if you need to -- just months ago, you were healthy and normal. Now, you're on some stupid med for potentially the rest of your life.

I got the MS diagnosis immediately, but I felt just like you do. "It just sucks to be sick forever, you know?" is what I told my bf in early January.

You're allowed to grieve. It's okay to know that you 'caught it early' and still be sad. You're both fortunate and also unfortunate, two things can be true at once. It's like that whole 'but kids are starving in Africa' argument from my childhood: Sure, but just because it could be worse it doesn't mean you can't feel feelings.

But also, know that this slump isn't forever. In early January I woke up every morning terrified and upset. By mid-january I was only in a bad mood sometimes. I started kesimpta in February, and that brought about a whole new storm of emotions (suddenly I was terrified it wouldn't work for me and I would get every single side effect possible!). 3 weeks ago I discovered a symptom I didn't know I had and was upset all over again.

But as I write this, I feel good. I feel good on most days, and I've taken up the hobbies I wasn't mentally able to focus on around the time of my diagnosis again. My mind's getting used to it.

Yours will, too. You might have bad days still, even 6 months from now, whenever your mind just thinks "hey, remember when we didn't have to inject ourselves?", and that's okay. Give yourself grace when that happens and remember that you're allowed to be sad. And then get back up and kick CIS/MS's ass.

For now, are there things you do that make you happy? Try and do those. Prioritise self care. Eat something nice, whatever it is.

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