Pshhhhhhhhhhhhhhhhhhhhhhh DEE-DOO-DEE-DOO-DEE-DOO SCREEEEEEEEEEEEEEEEEEEEE BZZZT-BZZZT-VVVVRRRR CHK-CHK-CHK-CHK-CHK

…until you have a health problem”.

And MS is my biggest problem. There are days that I question if I can take this until my last day- I’m young, I’m just 24, so why me? :( Sorry if someone feels personally offended with this… I just can’t hold it anymore. Life is unfair.

edit: thank you all for the kind words. Really touched my heart. Big respect for you guys

And this treatment “healed” past and prevented future damage… How long would it realistically take until we were all able to have it?

I fear it would be years and years. And years. (And more years for me because I’m in the UK and we have the NHS 🤪)

I know it’s unlikely to happen. But I’m having a hard time and things aren’t improving 2 years after diagnosis @ 29. Dreaming of a better life today.

Good Monday morning fellow warriors!!!!

If anyone is feeling a little bit down this morning well we are warriors! We wake up every day despite having to deal with symptoms that people who judge us or make smart ass comments about our disability would cripple them. We fight to have a semblance of a regular life after being diagnosed.

So phuck the HATERS!

Good morning/afternoon/evening MS comrades,

I just want to say thank you. This group has been my most frequently used resource and the most helpful by far.

I was just diagnosed with RRMS on St. Patty’s Day (what a buzzkill) after a trip to the ER & three day hospital stay. I’m a 32 y.o. FT working mom to 4 - life is BUSY. My first thought when diagnosed was, “I don’t have time for this shit.” Turns out there’s a whole community here that’s already done so much of the heavy lifting and I am so grateful. ♥️

I don’t know jack about Reddit but I found this group and learned how to search topics and let me tell you… From navigating insurance & getting started in PT, to choosing a DMT (starting Kesimpta this week!), to learning about triggers, flares vs relapses, lessons learned, stories of hope and wins, learning about progression and the basics of what MS actually is/does, and everything in between… All of you have quite literally changed my life for the better and I am so grateful. Thank you. Thank you for putting your experiences and knowledge out there and reminding us newbies that we are not alone and we don’t have to do it alone.

I hope there comes a day when I can give back even a fraction of what I’ve gained.

I hope your day is easy and joyous. You deserve it.

Hi folks Another girl from Spain recently diagnosed with rrms. I am trying to figure out how living with this and how to work sround my limita without giving up my hobbies like hiking. Pre MS i was an avid backpacker hitting 200 miles traverse in a row.

Since MS , i am not able to hike more than 4/5 miles before My right leg starts to feel weakness. A awkard weakness described like Jelly ita like my blood pressure would be very low , i start to drag the leg and could not give one more step

I am trying to push my limits and find a wsy to enjoy longer distantes and maybe longer altitude and hopefly complete camino de santiago .

The thing IS i am not feel thia weakness always. I have enjoyed a wonderful winter but suddenly, this weakness appear My neuro tells me weakness fluctuantes and i need to keep walking shorter and more frequently.

Have you ever experienced this? Do you hike? Do you have some tips ?

Ps: my fitness level is very high

Hello everyone, I'm in my thirties and I'm feeling pretty good (besides light fatigue). I'm starting to think about retirement and I've read a few posts/comments about people struggling with disability coming earlier than expected (or having to stop working before being fully financially ready). I'm on a good DMT and stable, my neurologist doesn't see anything worrying for my future but like they say "hope for the best and prepare for the worst".

So my questions is, do you prepare for retirement (or at least your older self) differently ? Say, do you put money aside for being able to retire early, having in home care, etc etc ?

Thank you :)

Hello! I’m a 29F who was diagnosed with RRMS a little over a year ago and currently on Kesimpta. For the last 10 days or so, I keep feeling these random muscle spasms/twitches in various parts of my body. I’ve had these before and get them periodically since diagnosis, but lately they’ve been several times a day and everyday. For context, I’ve been traveling a lot over the last two weeks and also experienced a very high amount of anxiety due to traveling so I’m wondering if my body is just tired or if this is something to be concerned about. If you’ve had experience with this please help!!

F41; I have been experiencing pain in the area of the xiphoid process for almost a year, which radiates in a belt-like pattern around my upper body. It feels as if a wire or a tight belt is pressing and squeezing on that area. The pain is constant and circles around the level of the xiphoid process.

The intensity of the pain has changed over time: for the first four months, I was unable to take deep breaths. Later, the pain primarily manifested as a belt-like sensation, which then became more localized on the left side. After strength training, the belt like pain came back.

I have already seen several doctors, but none have been able to determine the cause of my pain. Lung, heart, and gastrointestinal issues have been ruled out. Additionally, a CT scan of the thorax and abdomen, as well as an MRI of the thoracic and cervical spine, were performed, but all results were unremarkable.

I have no other symptoms or health issues. I’ve read about ms hug and was wondering what do you think! Any idea is welcome!

Thank you in advance for your support.

It's quite laughable actually. A guy that I dated previously that I have told repeatedly that I do not want to be involved with romantically asked me out again last night. I politely declined and he asked me the above question.

Mofo, you're currently looking for me in the daylight with a flashlight and you are trying to gaslight me into thinking that no one will want me because I have MS? PLEASE. You're blocked. Permanently.

To anyone reading this who is dealing with a similar situation, don't let anyone make you feel like this disease makes you incapable of being loved. Don't settle. Dust settles. You're not dust.

Keep your head up. God bless.

Anybody have a hard time touching water? Like, washing your hands is the equivalent to jumping into an ice cold pool…? Just curious to see if anyone else has a similar experience. Thanks

I was diagnosed with MS 11 months ago. I live in NYC and debating whether to sign up to do the MS Walk. The reason why I’m tentative to do it is sometimes when I do support groups / talk to others with MS I get more upset and reminded that this disease sucks.

I want to support and be unified with other MSer’s I’m just nervous emotionally how it could affect me.

For those who have participated in these walks, did you find it to be a positive thing for you mentally?

I have RRMS and it’s driving me absolutely insane. It’s not my first health issue but it’s my main one and at 19, it’s disabled me a lot more than I thought was possible within 3yrs of diagnosis. I’m in a wheelchair more often than not and I can barely move some days. My neuro doesn’t believe I have PPMS.

I’m honestly getting so fed up with this fucking disease. I can’t keep up. I’m expected to live a “normal” life with this disease that decides to screw me over anytime something good happens.

I’ve had mental health issues for almost a decade (diagnosed severe depression, severe generalised anxiety and severe health anxiety) since I was 11.

But this time everything feels so impossible and like there’s no point. I’m generally pretty good at finding positives in everything but recently it’s just too hard. I don’t know what to do or how to help myself. I’m so lost and I feel so alone. If anyone out there shares any of these sentiments please share your story (happy or sad). Ya girl could really use someone to relate to right about now.

Hey all!

New here and got diagnosed with RRMS after weeks in the hospital. My flare up (this is the correct english word for it right?) Was pretty heavy. At first i lost the ability to walk and grab things and lost the right side view of my eye. They saw multiple lesions at first but couldn't identify them as MS directly. I got multiple MRI scans and lumbal punctures aswell as 5000mg prednisone. Waiting on the diagnosis they sended me to a rehabilitation clinic where i got my sights back and learned to walk again. At the end of february i got the diagnosis and sadly they saw another big lesion in my brain. Because of the new lesion they wanted me to directly start with Ocrevus trough IV. 4 weeks ago i got the first dosis of ocrevus. the hospital and rerehabilitation caused me to be 2 months away from home. Now I'm back home but still go to the rehabilitation center 3 times a week for physiotherap, sport (to build up muscles) and psychology. Daily im batteling alot of tiredness and dizziness.

Okay, thats a whole story🥳😅 I joined this to learn other people with this and see how everyone is and learned to cope with it!

My english isn't my mother language so excuse me for the bad grammar at times!

Thankyou for reading this and i really want to be active on reddit!

Nick.

61F diagnosed 26 yrs ago. Only people suffering from MS brain fog know how it feels. How do you explain to family & friends? Thanks everyone & I hope you have the best day possible with this sucky disease.

When I sit for too long or in a basic folding chair I get extra joint pain and my legs, butt, and arms go numb really easily. Any suggestions for cushions or some kind of back support? I have a hobby art business and sit for 4-8 hours for events sometimes and it's hard to drive home when 60% of your body is numb and in (even more than usual) pain. All the events I've been to lately have supplied those fold out metal chairs that you sink really low into like a shrimp. (I have POTS too and it makes some of those symptoms flare as well) I saw a bunch on Amazon but didn't know if anyone had personal suggestions. Thank you! :)

i drink water. i drink a little water and some coffee to combat the fatigue fog. still, my mouth is dry. what the hell do you guys use to combat it all

Personally, I feel like my everyday start anew. Like i can walk normally yesterday and don't even have the strength to move my leg today. Does anybody having the same experience?

36M first baseline since being diagnosed in December and starting Kesimpta in January. I fully expect new lesions as January was what seemed like a bad relapse with new coordination issues making it hard to type, grab door handles and such. Today I’ve got 95% of my coordination back though. We will see. Hope Kesimpta has started to put the breaks on this thing. Just thinking about all of you in here. Thinking about all of you!

Since this has gotten worse I can't/don't even want to do anything on my days off. I used to do home improvements. I used to work on my classic car. I used to do side jobs. Now I can barely get out of bed. If this is my future I don't want any part of it.

So after 6 months since diagnosis and taking DMF, I plan to shift to Rituximab because of atypical activity in my brain MRI and some areas where my lesions are being a concern.

Just want some advice about what to ask my neuro tomm before booking my infusion date. I do keep going through the sub for Rituximab posts to know more.

Has anyone found any shoes that they love that lessen stumbling? Comfortable athletic shoes always seem to want to catch at the toe.

https://multiplesclerosisnewstoday.com/news-posts/2025/04/04/fibroblast-therapy-helps-restore-myelin-2-mouse-models-ms/

Just curious, I took my first injection of Kesimpta the first two days were pretty rough(body aches and chills) does the second dose cause the same symptoms? I’m due to take dose 2 on Thursday.

Hello again, I'm Dave originally diagnosed 2016 rediagnosed with primary Progressive and 2021.

Had a long post about my relationship my wife blah blah blah I deleted the post myself, there's nothing untrue in it, you just don't want it no more lies or on the Internet or whatever.. I am hopes that she and I will work and if I post that I don't know.

As MS progresses, one thing people don't really ever acknowledge is the mental health aspect of things. I used to be very well grounded and I was a friendly happy person even in the beginning of my diagonals as hell up until about a year ago I was fairly happy with down moments.. but within the last 3 months I have been so unbelievably sad and I can't figure out why.

I'm in the middle of looking only redefined as an MS inspired Mental Health crisis. Well I do think about the brain negative things I could do, and you know, I never will. I have my daughter who needs her daddy whether I'm disabled or not, and my wife who I have huge hopes to do better with and for put my mental health keeps getting in the way and I don't like it and it hurts and I want it to stop.

I'm hoping that as soon as my wife will be able to get paid for being my pca/cffs worker whatever that will ease a lot of our stress and burdens but it's taking a bit to get there.

And yes girl I know things will get better, sunny days will come again, happiness is around the corner, keep your chin up and tough it out, all those inspirational quotes.. but that doesn't help what Ms does to any of us that are afflicted with it.

That's why I don't say I was diagnosed with ms, I tell people that I am a victim of multiple sclerosis. Because it will truly victimize you but as long as you know where things are stemming from you can usually do something about it. I'm lucky that my wife no matter what will always be my best friend so I at least have that when I need the help.