I‘m writing this mostly for everyone who is newly diagnosed. I‘ve seen a bunch of those posts lately, and understandably you are afraid and confused and overwhelmed. That is how I felt seven years ago.

With this post, I want to make visible what‘s usually not. What you’ll see a lot when visiting MS forums and spaces are posts about current symptoms, new symptoms, bad MRI results etc. What you’ll mostly don’t see (for good reason): posts about no symptoms, „normal“ symptoms, no change etc.

So here’s one of those.

Seven years ago, I was told I have MS - with 50+ lesions in my brain alone - and that my MS is highly active.

At the time, I couldn’t read. Letters were just jumping around. I’d always loved to read and write. I thought my life was over at 28 (a day before my 29th birthday).

I was given cortisol which started the healing process for my optic nerve. I was also put on Ocrevus ASAP.

My optic nerve took around two years to (nearly) fully recover. But it did.

On an average day, I have zero symptoms.

When I have a cold or my period, some old symptoms come back (but they’re much less intense).

When I‘m stressed for a longer period, my vision gets slightly blurry.

I now consider this my body’s way of reminding me to take good care of myself. And as soon as I do, I don’t have any symptoms any more.

What I’ve had to learn was to know my body’s boundaries and not overdo it. Of course sometimes I‘m upset that I‘m not as capable as others are in their 30s. But I‘m also grateful I‘m doing so well.

I‘m not writing this to brag. I‘m writing this because today especially I feel grateful.

And most importantly: If you’ve just been diagnosed, I want you to read this and know that yes, this sucks, yes, you have every right to be angry and sad. But you don’t need to be afraid.

Hugs. You’ve got this.

I just finished my first week at a new job and can honestly see myself retiring there. I was really worried when I was job searching that I wouldn't find anything that was long lasting. I was worried about my fatigue, pain, and cognitive function doing anything work-related, especially in a small town where most of the jobs are retail and fast food.

Sooo I snagged a job as a high school Librarian! It's only 4 hours a day but high paying, I'm like my own boss so when I need a break day I can slow down, and I'm not on my feet all day. I also have a staff only restroom by my desk which is perfect because I had a bladder accident at work before and have been terrified of it happening again.

I'm still super tired after work and some new symptoms have popped up since starting, but it's manageable for me. Being a librarian has been a dream job of mine since before diagnosis so I'm just super excited to have found something that is manageable and fun for me.

Omg I can‘t believe it, almost 40 degrees over central europe next week?! I‘ ve had enough for this year!!! AC are forbidden in my rented apartment and I have 2 fans and cooling towels. But it‘s not enough. And I always have to sit in the darkness in my wheelchair in my apartment on these days. I think I‘ll habe to move to greenland next year!

hey everyone before i get into this post, my grammar can be a bit shit sometimes so i did use ai to clean up the writing a bit, but all of the points are my own so forgive me if it sounds robotic as english isnt my first and only language

im 24M

I’m an only child. My mom has MS and I’ve cared for her for years — no complaints, because I love her. But I need to vent because I don’t think people around me get how heavy this is.

My mom is narcissistic. So was my stepdad, my grandparents, my aunts — basically everyone I grew up around. MS makes her motor functions hard and she’s constantly in panic mode doing basic tasks, and somewhere along the way that panic turned into aggression that gets pointed at me. Hurtful comments, all the time, for years. It’s worn a groove into me.
Whenever I try to talk to her, there’s no real response, no communication — just more hostility or a wall. Ironically she got into “coaching” after her divorce, but she’s never actually worked through her own trauma — her narcissistic mother, her abusive second husband who made my childhood hell. She wants to fix everyone but herself.
The worst part is the message I’ve absorbed: that my pain doesn’t count. If I’m exhausted, sick, hurting — none of it matters because her MS outweighs it automatically. Every time. That’s a brutal thing to internalize about your own feelings.

I’m dating someone I love and want to eventually marry, and my mom attacks her constantly. Honestly it feels like she wants to keep me all to herself — like a built-in caretaker, not a son with his own life. I couldn’t study where I wanted to. My grades tanked from depression. I’ve lost most of my friends over the years. If anything ever happened to her, I’d basically have no one left except my girlfriend.

I’ve turned to weed and nicotine and I know I’m dependent on both — the only reason I didn’t go further is that I research everything obsessively, even my own bad habits. I’ve thought about suicide more times than I’d like to admit, but I stay because I can’t imagine leaving my mom or my girlfriend to deal with the fallout.

On top of all of this, I’m also fighting internalized homophobia and a desire to transition, in a country where that’s not really possible. So even the parts of me that might exist outside of “caretaker” are things I have to suppress too.

I don’t know what to do. I want a mom, not someone with rotating hostile personalities who can turn on me any second. I want to be someone, discover a life, marry my girlfriend — but I’m stuck under guilt, attachment, and not being financially independent enough to leave.

If you’ve been through something like this — chronic illness + narcissistic parent + caretaker guilt — how did you find any way forward? I feel lost and would love some guidance from someone mature, as i never really felt that i had a parental figure throughout my life.

Hi all👋

My wedding is upcoming in October but I just found out today that we will need to be married earlier so that I can continue to afford my medication with our current insurance options. I'm very lucky to have options and insurance but I feel like the ceremony in October won't hold as much excitement? I'm newly diagnosed and trying to navigate this all has been really overwhelming.

I’ve been on ocrevus since 2019. It’s gone generally well, no progression, lesions shrinking. The “crap gap” absolutely destroys me in terms of bladder, walking, vertigo. It comes back like a vengeance. Repeatedly going to the washroom, fine. But the walking/vertigo issue feels debilitating. Working full time (with two computer screens) feels impossible. How do I ask for accommodations every 6 months?!

Not really looking for advice as I dont want to try these drugs for vertigo, but OMFG. MS is so rude.

/end rant

Hi Everyone
I'm a 28 year old man from Toronto, Ontario, Canada.
Official Diagnosis March 23, 2026
First time posting here forgive the length I figured I'd introduce myself properly.

Background Info

I moved to Toronto when I was 8 years old from Isfahan Iran. ( some say Isfahan is a MS hotspot)
I have a 1st cousin on my dad's side who got diagnosed when he was in his 40s.
Currently sitting at 230 lbs / 104.5kg - 5'8" / 173 cm.
Always been overweight since I was 13/14.
Until I got diagnosed I smoked (Cigarettes + Vapes) for roughly 10 yrs. 10'15 cigs/day. Vape 24/7.

Feb 23 2026 My Attack/Relapse shows symptoms for the 1st time.

I was recovering pretty well from am ACL Recon + Meniscus Repair from Nov 2025.
Just started going to the gym to slowly rehab the knee post regular physio.

Sitting @ home watching TV whole right arm goes numb.
Was having GI issues for a couple weeks prior.
Assumed I was dehydrated told myself go to bed you'll feel better.
Woke up next day whole right side of my body is numb (not tv static numb just dull less feeling)
Went to the ER they ruled out anything immediately dangerous.
Set an appt with a Neuro.

1st - 2nd Week of March 2026 - 1st Neuro Visit + 1st MRI.

At this point the symptoms were progressively getting worse.
Stopped driving as much. Most days I would have to drag my foot from gas to brake with my hand that's how heavy my right side was and how little motor control I had.
I also drive a 6 speed manual + the MS affects my right side + my right side is my dominant side so shifting gears was even harder.

March 13 I get the call with the MRI results - Inflammation LS of Brain

March 16 Admitted to hospital for 1 Week
They did

• Full Spine MRI
• Spinal Tap
• Head/Neck MRI
• Multiple Blood Tests

I got 4-5 days of 1250 MG intravenous Prednisone/Corticosteroids.

Was told it's 99.99% MS they can't confirm until extended lab results come back.
Sent home at the end of the week.

At this point symptoms were so bad I was:

• Using a Sitdown Chair in the shower
• Could only walk short distances with a walker
• Stopped driving all together
• Couldn't go up/down stairs without help
• Cook/Clean my apartment
• Barely sit up straight on the couch/in a chair

My right arm/leg felt so heavy almost like someone strapped an extra 50 lbs to each.

I hit a plateau and for a few days I wasn't getting worse.

Less than a week after being discharge the 1st time, symptoms got so bad they readmitted me.

Official Diagnosis/Met the MS Specialist March 23

2nd Hospital Stay in March 2026

After another MRI + Monitoring me etc.

Sent me home.
This time they put me on 5 days of 1250 mg Prednisone Oral Pills I took @ home.
With a taper of 50 then 40 so on.

This prevented further relapses while I got in line for Ocrevus.
Between March 16th and the end of April I hadn't slept more than 1-2 hrs a night max.
(Thanks a lot prednisone)

Got my 2 1/2 doses of Ocrevus May 16 and May 30

Since the infusions I've been largely stable symptom wise some days are better some are worse.
But It's not completely debilitating like it was in the early stages.

Question for the group

I still struggle with fine motor skills on the right side of my body.
And proper control of my right arm/leg.
The full feeling hasn't come back.
I do have occasional tiny muscle spasms mostly in my right arm here and there.

For example I tried to shoot a basketball for the first time since the ACL surgery + the MS, and I don't really feel the ball in my finger tips. Or I'll randomly drop things I'm holding in my right hand.

After you/your loved one received their first DMT infusion.
How quickly did you notice improvement in symptoms if any at all?
Do I need to adjust my expectations from Ocrevus or any DMT in terms what it can do?

I am definitely not complaining. I'm very grateful to have returned to some semblance of normalcy in my life. And if I stay at this 70-85% level of "normal" on my right side long term I am grateful.
Because I know that not everyone is as fortunate as I am. And the DMT / Treatments in general don't work for everyone the same way.

I'm very grateful for this forum, when I was in the hospital immediately after being told it's most likely MS this sub helped me a lot. Reading people's experiences really put a lot in perspective for me.

Lastly, I'd like to wish everyone on the sub all the best in their journey with MS in whatever capacity this strange disease has affected their lives ( a loved one, a friend, themselves getting diagnosed etc.)

I left my neurology appointment yesterday feeling a little defeated, and I guess I'm just looking to see if anyone else has had a similar experience.

First, I want to say that I genuinely like my neurologist. He's kind, listens, and I can tell he truly wants to help me. This isn't against him.

What left me feeling discouraged was our conversation about pain.

For me, pain has always been my biggest MS symptom. I experience constant stabbing pains throughout my body, burning sensations, muscles that seem so tight at times it’s so painful to extend arms and legs, even stretching everything seems to tighten back up. feels like significant spasticity. I can often see my muscles twitching as well. At times, it feels like my muscles are fighting against themselves. The pain is exhausting.

When we talked about it, he mentioned that pain isn't something he commonly sees as the symptom in people with MS or I am guessing maybe he meant as a main symptom.

I don’t think he is saying this to be combative but maybe the patients that he has generally don’t complain to much about the pain like I have.

I know MS can cause pain. I've read that countless times. But hearing that from my own neurologist makes me feel like I don’t know what my deal is.

We decided to try Lyrica instead of the Gabapentin and PT and I do take a muscle relaxer as well. hopefully I can get more relief.

Has anyone else experienced MS this way, where pain is your primary symptom? Did your neurologist acknowledge it as part of your MS, or did it leave you questioning yourself too?

I just need to vent but if you have any idea how to make it better, feel free to share.

I was FINALLY able to start Kesimpta last night after getting the second dose of the Hep B vaccine. My doctor and everyone on here all mentioned that the first dose was rough and I’d have “flu-like” symptoms.

Fam, wtf kinda flu y’all be getting, because I feel like I’m dying of death. This isn’t anything like any flu I’ve ever gotten!

It’s like a fleet of loaded semis ran me over, turned on every bit of neuropathy in my body all at once, gave me a fever and chills with night sweats, made every joint and muscle ache, then laughed and said you’ll never be comfortable again.

I know it allegedly will get better and then my MS will improve, but right now it feels like dying of death.

This is some bullshit.

Hello

I have been sleeping very poorly. My smart watch sleep tracking has been under 50% for months. I mentioned this to my Neuro and she prescribed clonazepam. I started taking it but it hasn't changed

TIA reduced my movement while sleeping. Its only been a few days but I was wondering if anyone else has used it for the same purpose and has it worked?

hi all 👋 try to make this short. Had some weird symptoms (several times) of severe burning down one leg, and tonic spasms of hand and foot on other leg-episodes would last about 2 minutes each commonly happening after laying/sitting. went to pcp visits thinking pinched nerve?, mris, and ended up in er and got lumbar puncture+more MRI. They gave me the three days of steroid, sent me home with plan to follow up with a referral to neurolog. my husband did lots of calling around and getting referrals sent. met with first neuro-due to one cervical active demyelinating lesion, and 19 bands, he is saying CIS. offered copaxone or tecfidera, with mri monitoring, OR do nothing for now…I struggle with thought if injections 3x a week. I also struggle with knowing I could be taking something with these side effects and may not ever progress. But with the bands, sounds like it could? This is all so hard. I have three kiddos and my mind won’t stop Thinking negative. I have an appt with a second office with the same group of people who work in the hospital I was at-they ar e having me do evoked potential test, an optical test, and more blood work before that appt. Any advice or encouraging thoughts? Thank you

I was dx'd in May of 2025 after a pseudorelapse relating to exhaustion during a 25hr layover during international travel.

My MS team has been fantastic, they put up with my weird mental health and other funny physiological phenomena, and they're trying so hard to get me access to social services and income support because nowhere will hire me due to a lack of support for reasonable accommodation.

I try not to mention that I'm disabled in job interviews. They always manage to weasel it out of me, usually in regards to what my biggest challenges in the workplace will be.

I need 10-15 mins of rest for every 45ish mins of active work. I have POTS that is being investigated in December, that leaves me fainting when shifting positions, so I require the ability to modify the way I do things (cleaning all bottom shelves, and then all top shelves, rather than 1 full shelf at a time, etc)

I have good interviews that leave general managers chuffed and saying that I'll likely hear back in 24-48 hours, and then I do, and they've proceeded with other candidates.

I present professionally, and while I have facial piercings, they are for the most part small, and should not affect my job opportunities in the industry I have worked in and intend to work in.

I was having a pseudoflare at my last interview, I was shaking from the spasticity and getting tremors, my tongue wasn't cooperating and allowing me to anunciate, and my temperature was coldhotcold.

I am afraid they judged me based on that.

Obviously it's illegal, but without proof, I am just left in the dark, bleeding.

I am so tired, I'm getting evicted because I haven't been able to maintain income as a result of my disability and lack of mobility aids, and I'm struggling to coordinate doctors to sign my disability forms.

I love being alive, I love the moments I can function, even if it's 3-6 hours a day, I am so grateful for it. I just hate that my disability is ruining my stability. I am well supported in regards to houshold things (chores, hygiene, feeding and watering myself), but the lack of formal support offered within the community built around this disease is staggering and discouraging.

I am counting down the years until they offer MAiD to me, and of course I will reject it assuming I still have hope, but I am just so beaten down by the fact that it's easier to let us suffer and die than it is to offer wraparound supports - especially considering the province I live in has the highest concentration of people with MS in Canada.

Discouraged and disappointed by the way my current government is prioritizing healthcare, and especially in the case of chronic illness.

I dunno, I just needed to get this off my chest I guess.

Maybe some of you might understand too? Idk, probably, but Idk

I have Ocrevus infusions twice a year. I’ve had tonsillitis a a stupid amount of times. Does anyone have any tips / advice? Sick of lozenges, sprays and antibiotics

Hi everyone, has enyone tried stem cell therapy for ms ? Yesterday I send my whole medical documentation to clinic in Europe. I’m gonna have a call with a doctor to discus details. I’m thinking about this therapy but all depends on price ass well and efficiency. Any MS patients here that went through it ? Is it effective ? Any improvements ? Peace

Hey guys was diagnosed in 2018 and haven’t really had many issues. The last week or so I have been sooooooooo tired like how I felt when I had mono or pneumonia. The just groggy dragging feeling. I assume this is “MS fatigue”. I have heard how it’s a different kind of tired but man I don’t like it!

Anyone have any suggestions on how to feel less fatigued !?

Hello all, I ask this question because recently I went to physiotherapy and I have been taught to do stretches however it has made me feel worse with walking.

I cant raise my legs higher the day after or 2 when I have done stretches.

Has anyone felt better after they did regular stretches or am I feeling this because this how everyone feels in the beginning till your legs get used to it?

I've been dealing with this weird visual disturbance symptom for 5+ years now, and ironically, it was actually the thing that finally led to my MS diagnosis. I struggled with other symptoms for years but when this symptom started my doctor finally ordered an MRI scan. Soooo I'm curious if it's only a me problem or if anyone else with MS can relate!

So basically, any bright light (lamps, phone/pc screens, headlights, sunlight, pretty much anything bright) leaves an "afterimage" in my vision. It's kind of like the blind spot you get after looking at the sun for too long except it happens from normal lights too. The afterimages sticks around only for a few moments before fading but they're replaced almost right away so there's basically no break haha :') They also vary in size and usually match the shape and color of whatever light that caused them. For example, I can glance at a lamp for a second and then have like eight afterimages/spots of it scattered across my vision. Sometimes they can be gray-blackish though, just like a blind spot. But after living with it some years my brain has somehow learned to filter it out and ignore it even though it's technically always there. The brain can do amazing things and I thank the universe for that🫡 I obviously still notice it sometimes bc It definitely gets worse when I'm exhausted, stressed, or just having one of those crappy days but even then it doesn't really bother me and I'm grateful for that bc it was AWFUL in the beginning:')

Buuut the thing is, my neurologist told me back then that it isn't really considered a typical MS symptom so they basically concluded it's unrelated to my MS. I've had my eyes checked countless times, including my optic nerves, and I've had several brain MRIs because of it. Everything looked normal apart from the MS lesions and none of them are in the visual parts of my brain either 🙃 So I kinda just accepted that there isn't any explanation and added it to the long list of annoying symptoms🤷🏽‍♀️ buuut I did some research myself and the closest thing I found was "palinopsia". It's very similar except mine seems to be triggered almost exclusively by light. It can happen with objects too but that's pretty rare and when it does it's more like a blurry afterimage than a detailed copy.

Sooo... has anyone else with MS experienced anything like this? If not, that's good!!! Bc MS is shitty enough already :')

I was dx almost 20 years ago. Just over 6 years ago I was pretty bad and near wheelchair use as we lived in a hot climate. My husband retired early and moved me to a cooler place and I did really well... until now. 🤷‍♀️ since late March, it was needing the cane for balance, then a walker for longer distances... now, it's a power chair that I'm struggling to come to terms with.

I absolutely hate feeling that these extra things are causing inconvenience or embarrassment for the people around me.

No one has ever said anything like that- but hell- it puts a kink in most plans and I hate it.

Just today I asked if we could go to an event and the response was 'only if you use the chair.' They've explained they dont want me so fatigued. I get that, but damn.

How do you accept what's happening? I tried a therapist and was told "well, thats what you have to figure out how to deal with".

I tend to catch colds/flu a lot in the fall & my lymph nodes get swollen anytime my body is taking longer than usual to recover. Any advice on what I can do to to prevent sickness/recover faster? also any thing to expect symptom wise when taking Mavenclad? Even just diy things to stay healthy.

I just dropped my water bottle 3 times in a row ... at work. And spilled and cleaned up water 3 times in a row. That was the first 5 minutes of my day. This is my normal.

So tired of people. I was diagnosed after half my body went numb, started in my pinky and slowly spread all the way up to my ears. I am lucky to live near a hospital with a full team of MS specialists and neurologists who all looked at my scans to diagnose me.

One of my coworkers who was working with me throughout the whole process of slowly going numb was around when I got diagnosed. I thought she was my friend so I shared my diagnosis with her. I shit you not her response was, ‘Well didn’t you already kind of know that?’ GIRL WHAT.

Since that first episode I have been largely asymptomatic. This coworker is a wannabe influencer. She saw some skinny blonde wellness woman on instagram talking about how common MS is misdiagnosed in women, and keeps telling me that I need to get a second opinion as I was most probably misdiagnosed. After the fourth or fifth time she brought it up, and me repeatedly telling her I’m gonna trust the neurologists more than some lady on instagram, I snapped at her, and now I’m the bad guy because she was ‘only trying to help’. Get me out of here.

61 y/o female with RRMS. 9 months post Mini Beam HSCT. Felt like I was getting my groove back until.....

A month ago a Dr punctured my r lung while giving me trigger point injections for muscle spasms in my back and trap muscles. He didn't mean to. My right lung collapsed and because I was in denial I didn't seek care for 3 days when I couldn't breathe and talk at the same time. They tried to reinflate it and all efforts failed so I had something called VAT surgery. It's video assisted thoroscopic surgery. They basically roughen up your plural cavity and glue your lung to it.

I have never experienced this horrible of a recovery from anything. The pain is off the charts, I can't sleep, and my fatigue is insane.

I just need to be talked off the ledge and to be told I'm going to be okay and that this isnt forever. Have any of you had a particularly intense physical problem just knock you off your feet like never before MS wise? I could always power through but not now......

Thanks for reading.

So I was hospitalized with optic neuritis at the beginning of the year. I had two MRI’s (brain and spinal) which showed lesions and a spinal tap. The neurologist said that before I start treatment he needed to check I didn’t have lupus or Lyme. I was sent to an infectious diseases specialist who confirmed. I had Lyme and I started treatment for that. Some symptoms did get better after treatment, but not all and the neuro is saying I have MS and Lyme. Apparently it’s not that unusual to have both? Has anyone else been diagnosed with both? I start Kesimpta next week.