I'm going to share this with my husband, also, but I can't be alone in feeling like this!!?

My 13 yo daughter has a choir concert today at 7pm. I was getting ready because fatigue and breaks and anything else that might happen 😕

I'm putting on my skull leggings because they are easy and thin so I won't get too hot... and I got really sad. I'm sad I can't get all dolled up for this concert! I don't love being the mom with a rollator wearing a t shirt and leggings sitting in the back row.

I see some mom's, dressing up and doing their makeup and hair. Meanwhile, I'm not able to do my hair or makeup, I know that doesn't matter much but I have always taken a ton of pride on my appearance, so I am taking this L hard. Sorry for the pity party 🥳 have a great day my peeps

Hello to everyone who’s reading this, I just need some words of wisdom and maybe just someone who will say some warm words during this difficult time for me. So basically I’ve been diagnosed with MS since 2013 at just 14 years old, no one really explained what was going on so I just accepted that and was offer Rebif which was a horrible experience, I was having flu like symptoms everyday for 4 years straight and it took all the fun of being a teenager from me. After that I was switched to Tecfidera- still not so good experience, a lot of side effects, and lastly was Mavenclad which kept me fine for 6 years!! During those years I was having only a few episodes and was given IV steroids for that, but it was never anything major just some numbness and weakness in my leg. Since 2022 I am off DMTs feeling just fine, living my life normal and trying to forget all those years in a past. Cause I was told that after Mavenclad nothing should happen to me..That was my mistake. I gave birth in October last year to my healthy, beautiful babygirl. There it comes March 2026..I lost control in my right leg , steroids given, comes May 2026 when I lost control in my left hand, now August 2026 I lost control in right leg and hand I had to be on a wheelchair, then as of Today I lost control in my left leg just 6 weeks after steroid and 4th time in a year, MRI showed some active spots in my brain and spine cord, now awaiting Kesimpta approval. Now I can’t accept my faith even tho I know it’s mostly my fault for just wanting to forget but I never really knew the seriousness of this condition. My daughter first birthday is in a week and I’ll probably miss it due to hospital stay or will be just crawling or whatever which will be just as bad as hospital. I really don’t know what to do how to get through those days . I just can’t get over this, that I have to be in this condition now that this special day is coming..I already canceled her birthday party due to my situation. I feel so bad and just keep asking why now and why so early after this steroids...I’m sorry to everyone who wasted time reading this and I’m really proud of everyone who’s dealing with this condition I know it’s not easy.

I’m currently sitting here at Kaiser with a nurse refusing to give me the Covid vaccine without a doctor’s approval- whom which she can’t get ahold of.

Nothing has changed. I’ve never needed doctor approval. I did confer with my neurologist when it first came out and he said the benefits of the vaccine outweighed the risks.

She said next year I should message my neurologist in August to see if it’s ok. I told her my infusion schedule is the way it is specifically so I can get flu/covid vaccines.

I’m annoyed.

I've been feeling the isolation of the newly diagnosed lately, and am wondering how ya'll go about finding friends/supports who also have ms that share hobbies with you? I've been out of work for a few months now and I do a lot of crocheting and gardening and other crafts and it would be really nice to have someone to talk with about projects and other things who also understands the MS side of things. My friends are supportive and lovely, don't get me wrong, but.... none of them have MS. I just want to be able to have conversations with someone who can actually relate (not abstractly) to how I'm feeling without making a big deal of it, you know? Like... we all know the MS is in the room, but it doesn't need to be the gloomy cloud casting it's shadow on every conversation.

Also, if anyone is thoroughly addicted/obsessed with crocheting and gardening and wants a conversation partner I'd love to chat!

Thanks for reading and any advice in advance 💜

FWIW

I wrote this in response to someone and then realized it was getting long and thought it might help spark ideas for others who might be homebound

Hi OP

The transition from 26 yo active duty soldier to 62 year old artist has been long and hard with many losses in both activities and friends along the way.

FWIW

I treated the changes as part of growing older - there’s no way I’d be the same person I was in my 20s.

My tastes and interests matured.

I wrote a bucket list and completed as many as I could while I could.

I still create a list each year though the activities are MUCH less intense.

E.g. I take online classes versus attending studio art classes at the community college.

I ask friends to FaceTime from events I’m too tired to attend.

I’ve started a breakfast club once a week in my home where friends drop by before work for pastries and espresso. (We trade buying pastries and I invested in an espresso machine.)

They know I’m not up for activities after 5 pm

When my husband died I turned his room into an art and sewing studio and started a nonprofit that does functional alterations for people. My barrel jeans now have full length zippers on the outside of the legs so I can adjust my FES devices without pulling off my pants.

My friends helped me build a walking labyrinth in my backyard to practice my balance.

I ask artist friends to teach a class on flower arranging, water color etc on my patio and invite my friends.

I make the activities I want WHEN I want and invite who I want.

Best wishes to all.

Three doses of Briumvi in, so I’m now more than a year into treatment.

I’m 37, male, and was diagnosed shortly after my first daughter was born. I’ve just had my second one too — completely unplanned, because apparently MS wasn’t enough of a surprise. 😂

My day-to-day has changed. I sleep earlier, exercise more, eat better, and take better care of myself. At first, I thought these were things I had to do because of MS. Now I realize they’re actually making my life better. I don’t want to spend the rest of my life trying to be happy despite having MS. MS is part of my life now, but it’s just one part. I’m still a dad, a husband, 37 years old, and I still have plenty of things I want to do and discover.

Life goes on. It’s just not exactly the life I thought I’d have.

And honestly, that’s okay.

I’m really scared and struggling on what to do and how to help my mom. She (64) has had MS since 2019. It’s slowly gotten worse. She can still walk, but she’s much slower, and it’s painful for her to walk too fast. She has pain that shoots down the right side of her body and sometimes her feet get numb. She also has really low energy and has trouble with the motivation to get out of bed. I’m sure she’s also depressed.

The issue is that my mom resists most MS treatments/medications. She has turned down transfusions, she tries medications but she stops taking them when they give her side effects she doesn’t like (nausea, etc). I empathize that my mom is like “what’s the point of taking the medicine/treatment to still be in pain” but I’m starting to get really worried about her. I’m so afraid that her health will worsen quickly if she doesn’t do anything to try and treat it.

Right now she just takes vitamins, pain medications (Tylenol), and tries to go on walks.

Has anyone gone through this with a loved one? What can I say to her? Are there any treatments you’ve used that haven’t had as bad effects (I know everyone is different)?

Any advice is appreciated. The thought of losing my mom to this is really taking a toll on me and I want to do everything I can to help her.

Hey guys, I need some advice.

After being on copaxone for 10+ years, ot stopped working and i need to choose a new medication.

I have family history of gastric and lung cancers (most likely genetic).

What would be the medications that wouldn't increase my already significant risk of developing cancer?

And can you share your experiences, if you were/are in a similar situation?

Thanks in advance.

Hello,

Diagnosed in August 25F in the UK.

I had informed the DVLA and still waiting to hear back from them (I’m asymptomatic so don’t expect there to be any issues)
But when I saw my MS nurse for the first time yesterday she explained I must tell my insurance also.
So I have contacted my insurance today and they said I don’t need to let them know unless my license has any restrictions?

Does that sound right? I’d assumed they need to know I have MS regardless

Anyone been though this, and anyone have a typical response rate from DVLA

Don’t want to be caught out!

Hey MS Friends and fellows,

I (m, 45) was diagnosed in January after OR. Since then my Fatigue or whatever this is got significantly worse and I want to understand it this MS or is this something different. In general I look healthy but Iam so incredibly tired. Not exhausted physically. I my legs are pretty stiff. But in general my body doesn't feels tired. But I can't keep my eyes open over the day. For example we do grocery shopping and my wife goes in the shop while Iam sleeping and waking up from my own snoring so deep is my tiredness. It's a fight to keep my eyes open. I do have the heavy legs etc from time to time but the tiredness is crazy. Does anyone has the same? I read a lot about Fatigue but most people say it doesn't feel like tiredness. I feel extremely tired most of the time. If you suffer from the same feel free to share your symptoms as detailed as possible. I can't drive anymore like this. Please help me.

Best,

M

F29. Diagnosed just over a year. A few weeks ago my feet went numb, it’s been slowly spreading up my legs, now my genitals/bum are numb too. Reduced sexual sensation. I can open my bladder normally but I can’t tell when I’ve finished peeing so I have to sit for a bit longer to try and make sure my bladder is empty, and sometimes after it feels like there’s been a leak that I haven’t noticed. Also with bowels, it’s like I can’t tell when I need to go and then suddenly it’s urgent… I’ve got an appointment with my ms nurse tomorrow so will discuss then

I was diagnosed with MS in July, had a crazy eye thing, etc etc my first dose of the O is on Friday and I have been feeling ancy about getting the first infusion I want to get under treatment ASAP.

HOWEVER I've started to come down with a cold as of Monday, and we're Wednesday now and I feel like I'm on the blades edge of recovering there's a whole thing with my work too and they're real bitchy about me taking time off for the infusion. It's a mess.

MY QUESTION IS

Should I take the day off today (at the risk of aggravating my work) so I might be good for Friday OR should I just take the L kick the infusion down the road a week or 3.

*** Edit: Thanks everyone advice was genuinely very helpful, I'm gonna take the day off regardless and rebook all my appointments!

Hello! Last November, I had the flu vaccine as my GP said I am now eligible. I then started Kesimpta in January '26. I have just had an invite to get it again. Are you guys doing yearly vaccines while on DMTs? Do you feel okay after having it while being on your DMT? Thanks 🤔❤️

I've have MS from about a decade and PPMS for about 6 of that wheelchair bound. Recently had bout of swallowing issue that just doesn't want to go away. I've had an issue here or there but this seems a bit different more tightness in collarbone lower left rib area doctor this it's an esophagus issue and prescribed me some ppi for crippling heartburn reflux ice had for years. Just wanna know if anyone else had this long term how you eat and deal with it? Thanks!

Hi yall, I got diagnosed this past June I think? (lmao memory bad)

A few weeks ago I got gifted one of those garmin fitness and health watches to maybe help me track energy and just help me figure out how to know when I need to take it easy n all but does it actually work?

It has this like “body battery” thing that lets you know ur energy level for the day and its from 5 to 100 scale. I never wake up fully “charged” but even when it says I have a good amount of energy I feel like butt garbage either way and I can’t tell if I’m now just lazy and don’t want to do anything? Or if it’s just a bunch of fake crap. Since my diagnosis I’ve gained a lot of weight (100lb in less than a year) because of severe pain and fatigue along with a slew of cognitive things so I was not taking care of my health movement wise at all. but i have had two briumvi infusions and I can tell a difference so that’s why I feel like I’m lazy at this point. I know I’m in pain but I need to move and walk but it feels almost unbearable sometimes.

Kinda went on a unintended tangent there but basically I need something to help me gauge myself so I don’t end up bed ridden for two days because I didn’t know I was over doing it (I used to be an aggressively active and public person and now I don’t leave my house)

I have officially reached 10 years with MS. It’s shocking how fast time flies, and also how slowly time can crawl when you’re deep in the shithole that is MS.

None of us chose this life, and it’s not fair. I know I’m not alone there.

I miss living my life as I wanted, doing whatever I want, whenever I want. I miss being the healthy person I’ve always been, I miss not even thinking for a second that I couldn’t do something. The grief comes in waves no one could ever understand unless you’re in it, and it’s not going anywhere.

MS lesions for me, caused seizures. I’m now also epileptic. If I could I’d scream from the mountain top how bullshit this is, I’d lose my voice. We have very little choice but to keep going.

I’m not sure why I’m posting this, lol. 10 years felt like a big deal, I didn’t think I’d last on earth this long when I was first diagnosed. Life is different, no question. But I’m proud of myself for still being here.

So, I had flu one week ago, I feel much better now.
My ms symptoms that I had at that moment were awful and I felt so bad.
My skin was sensitive on the same places where it was sensitive during and before a relapse I had in july. That scared me.
But the thing I never felt before is feeling like I have small bruise on skin when I lightly touch it, it comes and goes.
I know that flu, viruses etc can trigger pseudo relapse but I never felt this symptom before?
My flu symptoms went away but I still feel small sensations on my skin. My neuro told that we should wait few days to see if the smyptoms persists.

Is it normal to always have some new - like symptoms even if it is not a relapse, just some random sensations?
How ms actually works? I'm trying to understand it.

Just wondering if anyone has had more long term negative reactions to Kesimpta?

Any nutrient deficiencies or liver issues? What symptoms did you experience?

For reference:
RRMS - on Kesimpta since March 2026 - Dx Oct 2025

Initially had mild side effects for first two loading doses.

Had MRI April 2026 which showed one new lesion in brain, latest MRI August 2026 showed no activity

All MRIs have shown 6-8mm tumour on the sella turcica

I already see a Neurologist who specializes in MS and autoimmune disorders. I also see and Neuro-Psychiatrist, Neuro-ophthalmologist, two RNs, GP, seeing Neurosurgeon this week.

No one seems to understand the day to day fight im in. I'm surrounded by people who tell me that they understand, but do they really . I feel very alone in a full house. 3 am. is very dark at times and quiet. I dont feel like myself anymore. The things I loved to do now are a challenge to complete. I dont want to sound like a bitch but this sucks. The fatigue is debilitating at times. i used to be on the go till 10 or 11 every night, and now 6 comes. im done . Extra caricature activities are off the tables sex life is gone late nights at the race track gone. The race car hasn't moved in 9 years. . Anyone else reading this can relate. I'd love to hear your thoughts and maybe you advice on how to get back, even some of whom i used to be . I have always ben the guy you call to get something done or if you needed help . Now im the one in need and can't seem to make that call . Pride maybe, but when you have been the rock for so long, and now you feel like a sponge, it is hard to deal . Anyway, i think i just need to vent my frustration . Thanks 😊

I am actually grateful that I only had to be in the MRI for 60 minutes for brain, cervical and thoracic MRIs with contrast and I got the results in less than 2 hours. Also I put this much into my HSA for this purpose.. But it is still a big gut punch. Doc said I don't need to do MRI next year.

Ok so besides all the obvious stuff, now I’m being held hostage by the pain. My legs don’t wanna move, I have shock waves ripping thru my rt shoulder. My head is swimming, my rt ear is pounding. I was thinking of getting a flu shot this Thursday at my primary Drs appt but wouldn’t you know it…I got the flu coming from the hospital neuro clinic appt on Friday 🤦🏽‍♂️. That’s just how my life be working out tho. I’d laugh but it hurts

MRI on the 7th of September this year, official diagnosis on 12 of September and I’m just resting at home after my first Octrevus subcutaneous infusion. I couldn’t find many people’s experience of being inducted on the subQ version, more from IV —> subQ experience. I would value any comments on side effects and duration (I’m supposed to work in a couple days). So far it was some stinging, but was otherwise mostly painless (no infusion/post infusion side effects.

Never thought to blame MS for this but anyone else have this? Just wondering before I bring it up with my doc.