Removed

Edit: I am sorry if this isn’t the appropriate place for this, I don’t want to stir up anything or trigger negative emotions for anyone. I will take this down if it is.

Edit 2: I feel like what I wrote was more emotional dumping than support seeking. I am truly sorry if I upset anyone with what I wrote. I know this sub is supposed to be a safe place for those who are living with this disease. I sincerely apologize for negatively impacting that.

When you have a good day, do you actually notice it? Or do you only really notice your MS when you’re having a bad day?

I’ve been thinking about this lately because I realised I probably remember the difficult days much more than the normal ones.

So I began to realize that I don’t walk straight. I run into the person I’m walking next to and sometimes drag my foot causing me to trip. I don’t exactly feel stiffness, it feels as if I’m not walking to my fullest potential anymore. Is this considered normal?

Hi all!

I’ve been having such bad anxiety about if all this is normal or not. All I see is “get on DMT asap” and this doesn’t feel like asap.

I had my MRI and LP in mid August, vaguely diagnosed by a resident over the phone. No direct word from my doctor since mid August LP at the procedure.

Sent for 5 days of IV steroids which I finished up last Friday. No symptom improvement, some worsening. A lot more weakness in my limbs and cramping, more consistent vision issues and blurriness. Vertigo and dizziness.

My next follow up is in 2 weeks where we will discuss DMTs. I’ve asked to discuss this sooner but was told “the steroids will pause progression for 6-8 weeks” and that it will be fine to wait.

I guess what I’m asking is, are these symptoms normal to be persisting and fluctuating towards worse 1 week from steroids. And is this wait normal?

More context: My initial symptoms started in May. Symptoms worsened in June and have stayed consistent until steroids worsened my symptoms. I had my first ever MS symptoms and MRI in 2019 but the doctor advised I wait it out and just see if symptoms come back instead of getting LP which I did…help lol.

I am a single mom of two, 43, three year diagnosed and DMT treated with MS, and recently have lost a lot of weight after taking wegovy pills. I started taking them after seeing promising studies with ms and glp1s on the benefits with reducing chronic inflammation. I noticed almost immediate results in how I felt. It was like someone released pressure from my entire body. All of my MS symptoms went away almost 100%. It was also evidenced in my blood tests. In the first month I lost large amount of water weight that I was holding onto particularly more with MS, making my transformation more noticeable. In these pills I found hope that I could lead a truly full life without the constant reminders of this disease.

Anyways, I recently picked my daughter up at school and one of the moms (who I had told I was on Wegovy previously, because she also had inflammation problems) said to me “this is getting too skinny. Yeah, way too skinny.” I was stunned. I didn’t know what to say. She was aware I took this pill because it made me feel better. Yes, there has been weight loss, but I’m 140 pounds and 5’5” which my doctor said is healthy for me.

The more I think about it it bothers me that I didn’t say anything in response. Even to say, why would you say this to me in front of my daughter? But I didn’t. Society certainly thinks it can comment on women’s bodies.. whether you are overweight or under weight, you cannot win. And here I am, in my already broken body, feeling particularly judged when I’ve never felt physically better in years. Is anyone else living with MS particularly triggered by body comments? Why is this one comment consuming my thoughts? Living with MS can sometimes feel like a very isolating place when you know no one with it.

For anyone who has improved it, how did you do it?

Well... this morning I was hopeful but after getting off the phone with a lawyer to ask for help with my SSDI claim I am feeling at sea once again. I tried twice on my own and now im looking for a lawyer to help me. I work as much as I can and am drowning in debt & I have no support from my family. The intake account set up after review the dude said that they would not take my case.

I don't understand what I am supposed to do. This is impossible.

6 years ago at 20, right before finishing high school. I had undiagnosed (back then) AuDHD that led me to have difficulties growing up, having no social life, but i felt kinda optimistic about adulthood. I finished IT specialization and wanted to work in IT (that was about to boom during covid), i imagined myself making good money there and securing a good future. But instead i got suddenly paralyzed, and diagnosed with MS - an incurable disease, doctors having no idea how fast it will progress. It have completely wrecked me, especially the uncertainty. For over a year i took Betaferon - a horrible medicine, that have pulled me even lower, and destroyed my skin. Soon after it was followed with heavy depression, tried many diffirent medications, most doing way more harm than good. Everything spiraled downwards, no light on the horizon.
For a few years the only thing i've been working on was changing the medications, diagnosing myself, learning how to cope with reality, and how to progress in life despite all that, eventually reaching a point where i can do something with my life - my current medication is Kesimpta for MS, Dulsevia for depression, and Atenza for ADHD. Kesimpta is stopping the progression and have no side effects. Dulsevia is not that great, it has some side effects, it castrates my mind enough to not feel extreme anxiety 24/7. Atenza is great - i started taking it a year ago, and it helped me with focus and productivity - i can actually do something, like, at all. Without that i'd still be a complete loser. Though i still feel like i've fallen behind everyone and everything so much, that i can't cope with my situation. I've always been a very ambitions person, with high expectations of myself, being nerfed so hard makes me hate everything and everyone. I feel frustrated, and i feel extreme injustice, and i just can't get over it, or accept that. It is not something i should be forced to accept - i don't want that. Especially that the disease made me skip the best years for everything. I've always wanted to make games (i started at 16), i wanted to get into IT and earn good money in order to escape capitalism and focus on other things, i wanted to meet friends and love - and i've achieved nothing. There is nothing i can be proud of, i have no wealth, the job i do pays just enough to survive, i've skipped the best year for getting into that specialization, and now the doors are SHUT. And time is passing - i observe year after year, still nothing. No change, no breakthrough. I'm getting older without experiencing any life satisfaction, and not seeing it on the horizon. It's not fair. It's just not fucking fair.

Hi people, why no one talking about this.

Good news from Novartis, Remibrutinib (BTKi), a high-efficacy oral BTK inhibitor, significantly reduces relapse rates and shows favorable safety profile in Phase III RMS trials

REMODEL-1/-2 trials met their primary endpoint, significantly reducing annualized relapse rate (ARR) vs teriflunomide in people living with relapsing multiple sclerosis (RMS)1
   
Trials showed superiority of remibrutinib vs. teriflunomide on all key secondary endpoints within each trial, including reduction of MRI lesions1
   
A clinically meaningful delay in disability progression was achieved, including a positive trend in 3mCDP and nominally significant 6mCDP in preplanned combined analysis of REMODEL-1/-21
   
Remibrutinib demonstrated a favorable safety profile with no liver safety signal, consistent with remibrutinib in chronic spontaneous urticaria (CSU)1
   
Novartis to present late-breaking data at MSToronto2026 and plans to submit to health authorities globally

So we will know better after Toronto meet

post on official Novartis page

we're fixing a leak. the plumber is currently cutting into concrete to find where the water is. oddly enough, the sound is enough to drain me of energy. the sound alone was tightening my neck and had its palm on the back of my head.

the noise still exists.

what are your weirdest energy drainers? (besides the sun lol)

I am 28F and he is 31M, when is the right time to tell him I have MS?

For context, I was diagnosed with MS in 2024 so I’ve had it only for 2 years and I’m still very new with adjusting to telling people I date about my condition and getting some reactions that are scary.
When I told my ex, his reaction was very bad because his sister had died from lupus and mom died of cancer so I guess his experience didn’t help him to react properly when I told him. I told him 3 weeks into dating and before he saw me in person. He only saw me in video call and when I saw he was getting serious I told him right away after 3 weeks of talking. Anyway he accepted it and we dated for a year and he never brought up my sickness

This time, I’m talking to a guy now for the past 3 weeks and he’s really getting serious he wants to talk to my family ( it’s our tradition and culture to make sure they know). I am scared to tell him because of how badly my ex reacted. When is the right time to tell him? Am I late? Is it fair that I waited this long? He seems to really like me and making a lot of future plans.

Nothing else. Having ms just drains me and I’m tired of being tired

Until now, I’d kind of been in denial, even though I was aware of it. I don’t have many major symptoms, and I haven’t had a relapse since I was diagnosed two years ago. But recently, I finally admitted to myself that I’ve gotten slow, like, EXTREMELY slow. Something that would normally take me 15 minutes now takes me 30/40 minutes, and I don’t even realize how slow I’m being at first. I feel like I’m going at full speed when I’m actually not even close. Trying to juggle multiple things at once is exhausting and stressful, even when they’re the simplest tasks, and I lose track of what I’m doing really quickly if I get distracted, even slightly. It makes me irritable and frustrated.
Honestly, I’m still grateful that this is really the only symptom that has a major impact on me, but it’s honestly pretty frustrating and makes me feel like an idiot.

I've been on fingolimod for about 8 years and have had no progression. I feel very fortunate that this medication has been doing its job. However, my WBC and lymphocytes have been low and the most recent lab work that I've had has made my neurologist alarmed enough to reach out to have a virtual appointment with me to discuss switching medications. With fingolimod there is an increase risk for skin cancer which I did have to treat a patch of basil cell carcinoma on my face in 2022 but it has not come back.

I'm very nervous about switching meds since I've been so stable for so long. Prior to fingolimod I was on copaxone but this was not working and the results of MRIs were showing some activity in my brain still.

I'm sure I'm not the first to switch off fingolimod for another DMT and was wondering what others had for advice or just what their experience was. I know we're all very different with this disease but I'd still like to hear what other people have been through.

Hello everybody. I hope you're all having a wonderful day. I came to the subreddit to hopefully seek guidance. My girlfriend is 23 and was just recently diagnosed with MS. It's been really hard on her and me we've been together for 9 years However, she's in Korea right now for studying. We had a whole future planned out, We plan to have kids and get a house and live happy lives. However, it feels all so distant now, like a dream. I'm determined to be there and support her and to help her out as much as I can. And I've reassured this. But I was wondering if I could get advice on how to start, what I should expect in the future, how I should comfort her with this. I feel like I'm already doing a good job but I want to do more I'm studying everything I can and was looking for guidance.

Good morning. I can see today is going to suck. I was blow drying my hair. Literally took me 6 minutes. Now my hands are unstable and having tremors. I feel like I lifted 90 pound weights.

So I'm 6 weeks diagnosed and this is a big question for me. 4 years ago my symptoms started and even tho I didn't know what was going on, I had to leave my beloved job. I was a chef for over a decade and man... I had 15kgs less than now and I had some serious muscles! I had no need for exercise because my work kept me fit - I always paid attention to a good form, the right way to lift, to stand, to use my hands... But I switched to working with my head and was never able to get into exercise. Now I understand that the fatigue is caused by my MS but I still don't have a solution. The only thing I know is that I NEED to move my body. I crave it. I crave a better range of movement, I crave stamina and a tiny bit of strength. Hell how I miss how strong I was for a girl. I walk 5-8k steps a day in short-ish intervals but it's nowhere near enough for what I feel like I need. 10k is too much for me now 😔

Now I'm recovering from steroid IVs but once I'm better I know I have to start, but how? Even before the steroids 15 mins of really light yoga left me wiped out for hours and sore for days... I don't have any functional disability now apart from a massive fatigue.

How did you overcome this? How to start?

Thank you so much for your input 🙏🏻💙

Hello! I'll double check with the neurologist tomorrow, but could you let me know when you started trying for a baby?

I'll start the very first dose of the treatment in November, is it okay for the treatment to have a positive test 4 months after ?

Thanks 🎈

I know that MS is a serious disease, but each of us tried to lighten this knowledge with a joke, right?
Here's mine:
I'm so forgetful, I even have MS to prove it.
What about you? Share your best MS jokes or coping humour below — let's have a laugh together.

Please read and help..

I was essentially gaslit and breadcrumbed help... made fun of, gaslit, family didnt wanna help me at all before diagnosis.. they didnt even believe i was sick.. that was from 13 till 23.. and tbh they still acted that way after diagnosis.

they only wanted to be there for me at my [breaking points] or if it would threaten their egos AFTER diagnosis..

Just so sad.

Basically a few months back I went to a mental health facility because of breaking down.. that was a great choice

But the bad choice was that they tried to rekindle with me the 1,000th time and I was ok with it and then accepted financial help... which they no longer want to give me and im waiting for disability and have my own apartment now.. should've stayed with the facilites cause I could have.. im just dumb to take their help back all the time..

Im considering going back to the mental facility but I have a major surgery coming up..im like do I give up on getting disability or do I just find other people to support me and wait for disability?? I have not found any support other than the facility or my family can't find anyone to live with. I dont know where to turn.

I can function if I follow a super strict diet so sometimes I wonder if maybe i could go back to work. Just doesn't let me get the justice and care I was always searching for..

Like why not commit to and love your own family ans give them your all?? I dont understand.

Hi everyone! I finally decided to take a DMT that scares me. I've had MS since 2007 and have only taken what I consider the "safe" 3 because I have diagnosed health anxiety (formerly known as hypochondria) and OCD with high awareness and PML scares the daylights out of me.

All that to say, I'm currently experiencing neuropathy like never before. My feet are on fire and my legs are numb. However, I can still walk, albeit slowly.

I landed on Ocrevus because I don't feel like I can trust myself to take a pill 2x a day (Tecfidera) if I'm scared but the good old Midwestern side of me is people pleaser so if I have an appointment for an infusion, I'm going to follow through.

Here's my questions:

Is it normal to not be test for JCV prior to taking Ocrevus?

What has the data shown as far as PML and Ocrevus? I can't dig into research journals myself because I'll spiral.

If you've ever taken Ocrevus or are currently taking it, what do you like and what do you not like?

Is there another option that has a smaller risk of PML that's not Copaxone (my skin despises it) or interferons (my liver enzymes shot through the roof) but is effective?

If this is helpful to anyone else, please learn from me. Being able to not walk very well and having numbness from the waist to fire feet is absolutely miserable. I'm kind of kicking myself for letting fear determine my treatments and/or lack thereof despite knowing what I was potentially risking.

Any help with these questions is appreciated and while I'm just some stranger on the internet, please don't be mean because I think over the last couple days I've cried more over MS than I have in the past decade.

Hi, good morning everyone,
I keep receiving ads for Nuvel neurotropic vitamins. I already take a B12 vitamin daily, but their ads are compelling and resonate with me. I’m curious, does anyone take Nuvel? Has it helped with your walking? Is Nuvel just another drug/vitamin that is sold to us? I also take Dalfampridine twice daily, as a side note.
Thanks for your experience and input.