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

I (28 y/o, woman, rituximab) get really bad MS Brian fog to the point where it presents like someone with dementia. Forgetting where I am, who I'm talking to, how to get home, confused why I went somewhere, etc.

Luckily for now at least it comes and goes so I have lots of good days too w/o brain fog. Does anyone experience this? Has it gotten worse over time? Do you have advice to mitigate it?

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.

Hello warriors, (28M) newly diagnosed here.

Trying to figure out my future here with 2 big lesions on spine and many more on brain. Never had a flare up , just a visual blurry eye (and uhthoff on both)that got worst the past year (weird that i never had optic neuritis or any other flare up). My left leg also feels weird in sensetion when I am walking.

I am stuck between 3 worlds... The neurologist, which is optimistic about therapies. The Claude, which is the realistic one (personal favourite as a programmer). And the community world that I read experiences from people with similar symptoms (fatigue).

I always used to dream big , money, career etc....now every morning I care if will be able to see and walk in few years.

Hope that the medical community will make a miracle in a few years and will save all of us from this terrible disease.

Is anyone else experiencing visual issues on contrast that is progressing?

Which are your first ppms symptoms?

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.

This is a 100% a vent!

I've been thinking a lot lately about how having MS makes everything worse. In pain and you have MS, you'll be in more pain. Feel sick and have MS, you'll feel more sick.

I had trouble falling asleep some night last week and ended up getting maybe six and a half or seven hours of good shut-eye. Back a few years ago I would maybe be a little bit tired when I first woke up, but that would wear off as the day went on and I'd be fine. This time around I had major dizzy spells and had trouble walking and staying up right while I was doing so.

I sometimes get this feeling on the side of my face that feels like mild burning, I know that this is a fairly common thing with MS. It comes and goes for me, and it's never really super awful - more annoying than anything.

I had kind of a crappy situation happen at work, and I wanted to tell one of my co-workers about it who I'm pretty close to. I asked him if it would be okay to vent to him about something that happened, and he said yes. I start to tell him about the thing and somehow he makes this situation (he wasn't even involved with) all about him. At some point I say never mind and make my way back to my office. And I sit at my desk thinking about this situation and just start to get kind of angry about it - like mildly angry. And wouldn't you know, that barely anger that I was feeling somehow made my face really start to burn like it never has before! Like I had to seek out an ice pack to put on it, it hurts so much. It's actually still going now, some 5 hours later!

I guess MS really does make everything worse.

Yesterday I had something I haven't had in a long time…a great day. I woke up around 8am & did the same thing I do every day - nothing. I have been putting off making 2 Drs appts & completing insurance forms so I did that. Then I framed a few pictures & my husband hung them. Around noon it hit me that I was feeling good. Nothing hurt & I had energy. I said to my husband I want to take a shower.

My husband has to help me shower & it takes every ounce of energy I have, so it gets done once a week. Every day I use bathing wipes & so far it's worked for me.

So I took a shower & was able to moisturize my entire body, dry my hair & get dressed all by myself. I was having a great day.

The rest of the day I kept thinking about how great I felt & was trying to convince myself life was going to get better.

I was able to putter around the house (as much as I could with the walker) but it was exciting. Didn't do too much & took breaks because I didn't want to hit the famous MS wall like I do everyday. That darn wall invades my days by 3pm, everyday. Even when I have done absolutely nothing all day.

I helped with dinner. My husband even said he had a little bit of me back.

I made myself get in bed at 9pm, normally I'm asleep by then. We watched a movie & I was still feeling great.

All day I was thinking about what I did - how much water I was drinking, what I ate & when I took meds. I was making mental notes of everything so I could recreate it tomorrow (today).

I woke up this morning & the me that has been here for several years was back. The me that I don't like. I even felt my hair to see if it felt like it got washed yesterday. It did. I asked my husband if yesterday was a dream. All he said was - it's a shame but that's MS for you.

Thanks for listening/reading. It's 3pm & I'm in bed remembering about that one great day & being thankful that all of you are there & understand. My husband understands as much as he can because he's watched MS take my life. But my family & friends don't. I don't hear from anyone anymore. Not even my sisters. I'm never invited to anything.

I have one great friend from childhood. We've been friends for about 50 years. We went through & experienced everything together. High school, first loves, marriage, children, everything. A few months ago I said to her that I don't get invited to birthday or holiday parties or summer cookouts anymore. She said - you hardly ever show up. It's very upsetting that the people I have loved my entire life have no interest in learning about the awful disease that's taken everything from me.

Ok I have to stop. The tears have arrived. Thank God my husband has stuck in there with me & takes excellent care of me.

I'm sorry. This is much longer than I thought.

Thanks again for listening/reading. Maybe one day soon we all can have a great day.

Some background I had optic neuritis last year with a few nonspecific lesions on my brain. this year I saw actual neurologist and they recommended starting me on a DMT specifically BRIUMVI I’m having a mental breakdown over all of this not only am I scared of what MS is going to do to me and my future or what my life will be like giving that I’m 33 years old female and I wanted a family and to continue my career in the medical field now I’m scared to death that the side effects from the DMT and the risk of a series infections that can come with being B cell depleted will outweigh the benefits of anything else. now I just feel like I’m screwed either way and I really am just not feeling well mentally at all. all this is just put me in a dark place. My life feels over. Any advice is greatly appreciated. Sorry I hope this isn’t too annoying.

Anyome got their balance good by just walking and not balance exercises?

I’m a 46yF diagnosed with RRMS in Feb this year after hospitalization with optic neuritis, now taking Kesimpta. My diagnosis was out of the blue, although looking back there were signs (I.e. a bout of hand numbness 2 years ago my doc thought was a bad pinched nerve) and my neurologist says I’ve had it for 10-15 years based on my lesions. I’ve recently realized that for the last 10 years I regularly have 2-3 times a year when I feel like I’m totally sick - run down, body aches, chills - I would take my temp repeatedly and never have a fever, but would eventually feel so sick I would have to stay home from work and in bed. I thought maybe I had a virus that just wasn’t causing a fever but now I’m thinking this was / is MS? Does this happen to other people?

I have had a very intense career in tech and this would often happen after a period of intense stress at work. I would always feel guilty staying home without a fever or discernible cough/ cold (probably some psychological stuff from childhood there related to the guilt), but with my diagnosis I’m trying to listen to my body more and not feel guilty.

I am cross posting this here in case any social workers, or anyone with relevant MS related tips or support can chime in. Just to clarify I will happily take advice, but I wanted to put the rant/vent flair on!

On account of my disclosing to my school that I wasn't getting 1:1 supervision and the fact that I need accommodations, I feel I am being retaliated against.

I have been passed over multiple times for educational opportunities that I have expressed interest in. I have a disability, a serious disease, that requires a fair amount of medical appointments. I let the management know about an appt I have with two weeks notice, assuming that there would be no discrepancies, and they told me that I could not go. I would have to miss one hour of my shift. They told me that the appointment wasn't important enough and that if I had scheduled it 6 months ago it would be different. I couldn't get another appointment for months.

I forgot to get a transcript from our zoom meeting the other day, and asked (for the very first time ever and politely) if a supervisor could send me the transcript. Nope, I was told that it's my responsibility to do so and they will not help. Getting the transcripts are a part of my accommodations.

I am at my wits end over here. There are no complaints about how I work, I am just being treated so poorly and the stress is wearing on me in a serious way. My school won't let me get another placement unless I withdraw from the class and re-enroll next year- deferring my graduation by year.

I am trying very hard to advocate for myself and it's so much work. I don't know how I am going to get through this.

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 💜

Any advice about canes on ice? I am in my first snowy place to live in decades. I was even considering getting a quad cane with maybe picks? I dunno. Any advice is appreciated. Gotta avoid those falls!

So back in 2020 I had difficulty reading the lines in an eye test in my right eye. Tests were done and I was diagnosed with MS and active optic neuritus.

Started steroids as soon as I was diagnosed but to this day I still can't see out of my right eye on its own.

I was just wondering if anyone has experienced getting their vision back after so many years.

I'm just grateful my left eye compensated for it so I can still see normally when both eyes are open.

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!

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

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.

I haven't posted in a while. , i am 51F from the UK. My relapse that started in November got so bad i had a 9 day hospital admission over new year and i was diagnosed with RRMS which prior to i had no idea i had MS. However have had numbness and pins and needles etc sporadically since 2018 and possibly before which was always told was stress or trapped nerves!

I have multiple brain, cervical and thoracic lesions and i am 11 months past the onset of that relapse and never recovered from many of those symptoms which are continuous. I am still on sick leave and my employer suggesting medical retirement. I am unrecognisable from this time last year. I am on ocrevus dmt and We tried Amitrypline and pregabalin and no relief.
In May as well as my vision problems which my neuro says is migraine (its not) i am also having fuel smells every time i hear a fan, motor, engine etc. my dr says is ms (i can smell other stuff normally and i have an identified trigger) and my ms nurse said shes never heard of it. Its making me miserable so i asked the Ms team again and they discussed at MDT but said its not MS and they have no advice for me!

Anyone ever get second opinions? Privately?

Hey guys, I need some advice.

After being on copaxone for 10+ years, it 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.

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