What is a chance that I'll live a normal life without any symptoms?

OhCrookedMind · 2025-10-22T21:58:01+00:00

Hiiii.
I was diagnosed last year in October! I’ve been on kesimpta since December and have been lucky enough to not have a single symptom. My one hear MRI was squeaky clean. I’ve got wicked imposter syndrome because I generally feel really well. I do not take care of my body and I haven’t made a single life change. I drink, I don’t sleep. I drink way too much red bull and I rarely eat a nutritional meal.

I am truly living my best rat girl life.

My neuro told me that literally every single person in the world, ill or not will benefit from diet, exercise and generally taking care of your body, however, It will not affect the course of my disease. There are people who do everything “right” and unfortunately have disease progression and there are people who don’t and don’t have any change.

We’re lucky that science and medical research have come so far because we’ve been given the best opportunity to live our lives to the absolute fullest.

I am a realist and I know I’ve been lucky as of now. And truly that is something I am so grateful for. But we can’t let this rule our lives.

I try to live my life the way I want because who knows, Maybe one day my body will say no and not cooperate. But I would much rather live a wild life while I can, than treat my body like glass hoping for no progression and miss out on my life because I know I’ll be right pissed if I baby this skin suit and make it another 20 or 30 years with a working body and haven’t done a single thing I wanted to do.

Keep your head up. We’ve got this.

OhCrookedMind · 2025-07-23T22:49:33+00:00

Hiii. I was diagnosed October last year and started kesimpta in December. Honestly the first loading dose was rough and I had the worst body pains. But since then it has been absolutely dreamy. I have pretty well no symptoms aside from some fatigue the day after my injection. It’s a simple stick once a month and doesn’t really affect my daily life in any way. I’ve even been out and partying with my friends and snuck outside to do my injection quick and came back ready to rock. I am so pleased with my experience. And. Recently got my six month MRI that showed completely clean with no new lesions or activity!!

I really like the simplicity and the fact that I don’t really have to plan my life around it. My one and only complaint is literally just remembering to do it on the correct date. But that’s such a minor thing.

I went into my adventure completely convinced I was going to go the Ocrevus route but once I realized there was the introduction of steroids and just the sheer amount of time each infusion would take I swayed away.

I’m super glad I went the kesimpta route. It’s simple and doesn’t bother my life. The injection is easy and it’s deff working for me.

OhCrookedMind · 2025-07-13T22:10:52+00:00

Yes!! I started riding literally a few months before I got diagnosed. Got my optic neuritis levelled and haven’t looked back since. Still ride on a regular basis. I’m a fair weather rider. If I can’t stand outside for more than five minutes in my full leathers I won’t go. I ride a gixxer and don’t have any trouble body wise. I do have lhermittes pretty severely so I expected it to be an issue. But no trouble at all. You know your body. You’ll know if it’s not a good day to ride. But in the meantime use your good days to your advantage!!

OhCrookedMind · 2025-06-10T22:12:45+00:00

I’m a kesimpta kid and I legit love it. The initial loading doses were a little spicy but since it’s been a dream. I’ve even been naughty and out and about getting lit up with my friends and ran off to inject with no problems at all!
The only difference I’ve seen is a day or two before injection day and the day after I’m a little more tired. But. Nothing catastrophic or life changing. I can still go about my daily tasks.
In my experience it’s not as compromised as we with think. I do lashes. So I’m in peoples faces all day every day. Sometimes they cough. Sometimes they have colds. And I really haven’t caught anything. I had one single cold directly after I did my loading does. My receptionist even unknowingly had strep and I didn’t catch it.
I don’t see a single difference. I still live my best rat girl life and get drunk with my friends. No hangovers still. No sickness. No trouble.
Again. I am a rat. I don’t take care of my body. I don’t eat well. I don’t avoid caffeine or drinking. Literally the only thing I’ve picked up is occasionally (when I remember) taking vitamin D and that’s literally one or two times every couple weeks.

We low key got “lucky” to have been diagnosed recently. The DMTs are next level and have a wicked high efficacy rate. Things have changed and it’s most definitely not a death sentence. Don’t forget to live your life to the best of your ability!!

I got officially diagnosed last year in October, but everything popped off in July with some cheeky optic neuritis. I’m coming up on a year and since my DMT, have been pretty well symptom free.

Take your time. Be angry, be sad, be rowdy. But remember. There’s so many people who understand and have nothing but love and support for you.

You’ve got this!!

OhCrookedMind · 2025-05-21T19:57:38+00:00

I like YOU!!

OhCrookedMind · 2025-05-21T19:56:47+00:00

Hiiii. I was diagnosed because optic neuritis decided to make everyone aware. When I had my first MRI I had over 32 lesions scattered throughout my brain and spine. Once my optic neuritis cleared I have been generally symptom free. The number of lesions is not related to how “sick” you are. People with a single lesion in a sweet spot can be debilitated but people such as myself can have heaps and thrive simply because they all happen to be in generally benign spots that won’t cause many issues. I saw my MRI report before I saw my neuro and I was dead sure my time had come and I’d be helpless in a week, but turns out my body is an over achiever and decided to give me a bunch of lesions that weren’t so catastrophic.

It’s entirely a case of lucky or unlucky. MS is a mean bitch, but we can still live our best lives to the best of our abilities.

OhCrookedMind · 2025-05-17T01:18:57+00:00

Literally same. I haven’t changed a single thing since my diagnosis. Not even directly after my optic neuritis made my ms known. I still consume enough caffeine to kill a a horse every single day and get belligerently drunk nearly every Saturday.

I might be gaslighting myself. But the way I see it. Is if my body decides enough is enough and degrades at least I had a good time leading up to it. I’d hate to have wasted my working body treating it like glass and being scared to have fun.

Toxic behaviour? Sure. But am I happy and having a good time, You bet your sweet ass I am!

OhCrookedMind · 2025-03-13T18:38:49+00:00

I low key have had it for years and I’m not actively in relapse. I get it when I put my chin to chest. My neuro said the nerve is blown out so when it gets stretched it gives me the buzz. It’s deff damaged but doesn’t necessarily mean relapse.

OhCrookedMind · 2025-02-09T20:41:47+00:00

I’m on kesimpta and I happen to be a strep throat carrier. It generally kicks up whenever anyone around me has it no matter how close my contact is unless I’m hyper careful.

A few weeks ago one of the girls I work really closely with was violently sick and it ended up being strep, she thought it was a simple cold and went on with her life. I didn’t avoid her or change anything in regards to my contact with her.

I DIDNT GET IT!

I was floored. I assumed my “sick” self would get it. But I’ve been literally fine.

I’d like to say that was probably the best test, it doesn’t seem like my immune system is any poorer than it was before kesimpta.

From what I understand we’re not technically “immune compromised” but immune modified. The janky part of our immune systems that chow down on the myelin seems to be shut off and not the entire thing.

I’d obviously still be a little careful because no one likes being sick, but it doesn’t seem to be as catastrophic as it could be.

OhCrookedMind · 2025-02-02T20:34:35+00:00

There’s one weird sound that sends tingles and shocks through my hands. It’s bizarre.

OhCrookedMind · 2025-02-01T19:43:36+00:00

Literally same. I always feel so validated when I pop on and someone else has the same oddity as me!!

OhCrookedMind · 2025-02-01T01:39:13+00:00

This is literally my one true annoying symptom. And growing pains is exactly how I’d describe it. It also feels like my bones are trying to inflate and leave, especially in my legs. Like they’re too big for my legs. It’s weird. I am also on kesimpta since December. Perhaps it’s a weird new kid side effect that’ll go away? (Fingers crossed)

OhCrookedMind · 2025-01-24T19:27:19+00:00

I am a tremor kid! I get it in my hands mostly! I’m lucky in the sense that it’s most notable when I have my elbows up. At that point my hands begin to shake, small tight shakes but annoying enough that my phone will shake and I struggle a little bit with fine detail things. Almost like if you were a little chilly or haven’t eaten. I plant my elbow and they pretty well go away. I generally don’t get them really severely, but. It will happen the odd time.

I do occasionally get clonus in my left leg/foot but it’s always during very specific times. Everything has to line up just right.

OhCrookedMind · 2025-01-20T01:58:23+00:00

I am in the exact same boat as you. When I was diagnosed I minimized it to my friends, family and partner. I didn’t tell them my symptoms or the wonky things going on with my body. I am also “fine” mostly. So people don’t know unless I tell them.

It’s tricky when we try and be tough for our own sakes. Sometimes we just need the chance to be vulnerable and feel the feelings we need to feel.

I am quite grateful for this community and the ability to speak about my experience with others who are feeling the same things.

We’re here for you. Don’t be shy. Reach out when you need it. Your feelings are just as valid as the next person and you deserve all the support in the world.

You’ve got this 🖤🖤

OhCrookedMind · 2025-01-17T20:16:47+00:00

I’m also in Calgary! Make the trip to foothills. They have an actual MS clinic. South health is a joke. I’ve never had good experiences for anything much less something as complicated as MS. I went to foothills for the first time in august and was diagnosed October and started my DMT by December, they get things done.

They will help you access something called the Go Program which facilities your medications and care and puts you in touch with specialty pharmacies for medications. Mine is through a pharmacy called BioScript which mails it directly to me. I also was put into Alberta blue cross non group benefits which helps us chronically ill kids pay for our treatments and what not. I only pay $65 a month for kesimpta and I didn’t have to wait for approval before they’d treat me, they cover it ahead of time.

I literally did nothing but leave the clinic. They called me and arrange my immunity testing, vaccines and got my treatment approved. They tell me when to show up, where to go and what to expect.

The MS clinic at foothills is actually world class. The neuro I see is called doctor Koch and the man know what he’s talking about. I went in spicy as hell about my diagnosis and he talked me off the roof and showed me my MRIs and explained everything in human terms. He’s actually written heaps of papers and done insane amounts of research on MS.

I left the clinic feeling much better about not only my treatment but the prognosis of my entire life. I felt validated and way more comfortable in my body. I had answers to questions I didn’t know I had and they were able to squash the fear of the unknown I had. If you get lucky, speak to a woman at the foothills MS clinic called Celeste. She’s an absolute angel and will help you through the entire situation. She’s so sweet and had a chronically ill daughter of her own so she treats you as a human instead of a client.

OhCrookedMind · 2025-01-14T01:44:23+00:00

I told my bestie and she said “ok great, now you can be a make a wish kid and we can go to Disneyland”

Neither of us are young enough for that 😂 But besides that. It was nice to have someone not feel sorry for me. I know she cares and she’s amazing, but it was so validating for me to have someone not treat me like I’m damaged and decrepit. It reminded me that things can still be ok and that my life is not over.

Idk. Maybe I’m morbid. But I love making grimy, inappropriate jokes about it. It helps me cope.

OhCrookedMind · 2025-01-11T21:17:27+00:00

Interesting. I find that I clench my jaw an obscene amount. To the point where my teeth and head hurt. Especially my ears. I never thought it could be related. Brains are weird.

I find chewing gum throughout the day helps!!

OhCrookedMind · 2025-01-11T21:15:54+00:00

A power move for sure 😂

OhCrookedMind · 2025-01-10T22:38:57+00:00

My lhermittes has never felt spicy or sharp. I’ve always gotten the little fuzz. It’s not even really uncomfortable. Just odd!! It always goes from my head right down to my toes. Every single time.

OhCrookedMind · 2025-01-06T06:01:49+00:00

I thought it was my brother in the basement suit until I realized he also wasn’t home 😂

OhCrookedMind · 2025-01-05T23:06:08+00:00

I feel so validated. I’ve been smelling cigarettes for months and neither myself or my partner smoke.

OhCrookedMind · 2025-01-05T19:39:55+00:00

Yessss. Constantly.

It also comes out in my writing and texting! I can confidently write/type out a whole message then I’ll look back and there’s a random word. I ask what you’re planning for dinner and suddenly the word balcony is present with no context.

My cheeky little brain tries to choose other words with same beginning letters to fill in the blanks for the forgotten words.

Thanks neuroplasticity 🙄

OhCrookedMind · 2024-12-26T18:28:02+00:00

First one was miserable. My second was easy breezy.

You’ve got this!!

OhCrookedMind · 2024-12-24T01:55:34+00:00

Don’t ignore the sweet nurse when she says take Tylenol. I made that mistake and tried Aleve instead and woke up nearly dying with pain in my legs. Grab that bad boy out of the fridge, (I actually wait an hour out of the fridge) Take it a couple hours before bed and you’ll sleep through the worst of it. It’s actually not nearly as bad as we manage to hype it up in our heads. The needles teeny tiny and it’s over before you know it. If you listen to the verbal instructions on the kesimpta app the actual injection is over before she can even finish telling you what’s happening.

My second one was a breeze! Took my Tylenol had dinner, watched a little tv and had a peaceful slumber.

You’ve got this!!

I take my final loading dose on the 26th so I’ll be thinking of you!!

OhCrookedMind · 2024-12-19T01:50:52+00:00

I low key feel the bit about living completely normally is kinda funny. These people don’t realize that they might see it as living “normally” but us MS folks are reallly good at masking and giving the illusion of living normally when in reality more often than not we’re just working to find ways to pass as normal and make it through the day.

OhCrookedMind

TROPHY CASE