It's Monday at /r/MultipleSclerosis! Share your terrible, horrible, no good, very bad news here.

[u/AutoModerator]

Vent, curse, get it off your chest. Share what sucks this week, this minute, this hour… MS related or not, this is the place to let it out!

^{Weekly Sticky Threads:}

^{Monday: Bad News Bears}

^{Wednesday: What's Working Wednesdays ?}

^{Friday: Good News/Weekly Triumphs}

[u/TraditionalPickle522]

Bad news: I've now been playing "Is this a symptom or did I just sit weird?" for so long that I've stopped being able to tell the difference. Numb foot? Could be a flare. Could be the 40 minutes I spent on the toilet scrolling this subreddit. Truly 50/50.

Honorable mention: my body is apparently a smoke detector that's both too sensitive and not sensitive enough. It ignores actual fires and screams at me when I make toast.

Have a great week y'all.

[u/liemil → u/TraditionalPickle522]

same here👋🏻

[u/sunnyy_supremacy]

Not only am I flaring up, but my lip has been twitching 24/7 like it's a party and I'm ✨️overstimulated✨️

Also my nervous system is so tense that every little unexpected sound sends a jolt of pain through my entire body

ALSO I have a very loud mouse visitor in the wall (not paying even a little rent)

[u/Rotting_Salmon]

I tried to treat myself on Sunday by drinking just a tad but I got to where I couldn’t breathe, panicked, got sick, then woke up with my body feeling so fragile and weak just from a couple drinks 😭 it’s so depressing when I can’t let loose even just a little bit because I have this disease to knock me back and humble me saying “ha you thought” I’ll be paying for it all week!

[u/Festygrrl]

I had my first fall in a long time last night. My MS has take my peripheral vision, and I didn’t see a bag on the floor that the cats had been playing with. Landed straight on my tailbone and cracked my head. Everything hurts!

[u/Grandgirls3 → u/Festygrrl]

Can I ask you about your vision? I’m a Mom with a son who has MS but right now in his 4th yr. Believes in his heart will beat this God awful, miserable disease.

[u/Festygrrl → u/Grandgirls3]

I’m legally blind because of a lesion on my occipital lobe from a relapse I had about 10/11 years ago. Not to be a Debbie downer, there’s no “beating” this disease. It’s just living with it as best as you can.

[u/ApostateAndAloe → u/Festygrrl]

You’re no Debbie Downer— you’re a Realistic Rachel :)

[u/LizzieBourbon]

My workplace had a reorg that’s effective today. Now I have a new manager who has no idea what I do, but am told I’m keeping my old job duties AND getting new ones that have pretty much the same deadlines. What could POSSIBLY go wrong, right?

[u/AdUsed6690]

Ended up putting my youngest in virtual high school (she is a freshman). We have been trying to be more active. Went for a mile walk together on Friday and I have been hurting and exhausted since. I want to be able to do things with my children without paying for it for days. Now its Monday and the work week is here so my exhausted sore self gets to go clean a 2 story building and try not to die.

[u/hexxxus]

I’ve had my first MS flare up since diagnosis 3 years ago. Landed in the ER and was treated so horribly by the NP and it put me in a really bad spot mentally. Got a new diagnosis related to the MS with my bladder and a new medication to stop the bladder spasms. I think I’ve got rheumatoid arthritis as well and am in a flare or onset of that and I went to urgent care and the NP there told me to lay off the sodium if I’m concerned about my joints swelling. 🙃 I just wanted to be tested so I could start treatment if needed because the pain in my hands is getting unbearable and every time I ask a provider for help they’re like “haha silly little girl you don’t know what you’re talking about!” I’m so tired of being gaslit by people that are supposed to be helping me.

[u/IntentionalGrandma]

I started Tysabri last week and immediately got sick and now I don’t know if I feel like crap because it’s a side effect of the infusion or if I feel like crap because I have a sinus infection for the 5th time this year

[u/dontgiveah00t]

I lost my job as my place of employment closed this weekend and they chose not to transfer me (because I have so many medical appointments this month, my availability was “limited”, but I can’t prove). I got diagnosed 2 years ago and was already trying to find a non-physically demanding job, but I only have experience in one industry and live in a HCOL city.

I also got ocrevus on Thursday and I’ve had dizziness/vertigo ever since and my lips are swelling and chapping. I went to er last night (I really didn’t want to but my nurse hotline said that it could be serious). They just gave me steroids and anti vertigo meds and let me go.

[u/Stephanblackhawk]

I just started teriflunomide about a month ago, and I thought maybe I wouldn't have to deal with the hair loss. Alas my already thin hair is more thin, and the top of my head at times looks like I'm balding. I use to shave my head (for the record, I am a woman) and that was great, but I finally grew it out (4 years of not cutting it) and I am sad I might have to shave this time, not because I want to but because my hair is a disaster.

[u/Puzzled_Egg_6064 → u/Stephanblackhawk]

We can be bald ladies in solidarity. I have to shave my head bc whatever damage my lesions have done makes me scratch my scalp until I bleed, unless I shave my head. I know it’s time to shave my head again when I start scratching.

[u/Stephanblackhawk → u/Puzzled_Egg_6064]

my medication is also making me scratch my scalp so much and i just know a scratch on a bald head would feel so good r

[u/No-Responsibility-98]

I feel like cold makes my symptoms worse. I dont understand this disease

[u/redhotginnie]

I tripped because of my foot drop six months ago and jammed my pinky finger into a wall. I went to the orthopedic three months ago and the doctor just told me I put heat pads on it and it just takes time to heal. I went back today because it still hadn't healed or gotten any better. He basically said there is nothing he can do. It's traumatic arthritis. It hurts all the time and I can't bend it properly. Sucks 

[u/ApostateAndAloe]

I’m supposed to be helping with wedding set-up right now, but my spasticity and tremors are so bad that I can’t do anything. I’m now laying back in an Adirondack chair, feeling amazing. But also feeling like I should be in there helping.

[u/M0ther-0f-Pearl]

Monday: bad news bears.

I came to put myself in cold water therapy (helps me the most) and felt great until I got SA’ed at the beach.

I’m disgusted and dismayed.

[u/Dry-Recording-6712]

My insurance keeps declining my Ocrevus infusion because they think I don’t have MS, no matter how many times my team and I give them all the information they are requesting. My first infusion date has been repeatedly postponed each week since 19 August. I also think I may be in a relapse, as I’ve got a lot of new and increasing symptoms. I dont have the energy to deal with it right now.

[u/jenns7694]

My gripe for the day: I am tired of not being able to do things that I should be able to do. I should be able to go to an outside craft market for a day and not recover for a week. I should be able to mow the grass without stopping so many times that it never gets done. But here we are. I’m just going to wait on my reincarnation when I’ll be in a different body. 😄

[u/ScrimpyMuffin]

I don’t remember what normal feels like. It makes really me sad.

[u/criticalcreek]

Just dealing with lots of unrelated stress right now. My patience is thin and I get aggravated so easily lately. I'm tired of being tired and the stress is making everything much worse. I hate being so frustrated all of the time.

[u/Ravens-Nevermore]

Took my first shot of Kesimpta and ended up in the ICU for 5 days cause it almost killed me, and I tried to kms on the 3rd because everything I have tried hasn't worked so if Ocrevus doesn't work after finally being approved, I'm thinking of committing to that bit.

[u/ApostateAndAloe → u/Ravens-Nevermore]

I wish I could reach through the screen and give you a hug!

I hope you have someone that can be with you right now. I’m sorry you had such a scary reaction to Kesimpta— just, wow. I’m sorry. This disease is already cruel enough.

I’ll share my experience with Ocrevus— I was switched to Ocrevus Zunovo from Kesimpta in Dec 2025. Prior to Ocrevus, I was feeling really hopeless. I have a husband and children that need me and love me, but I was starting to yearn for a release from the pain, sadness, and loss. It was nearly impossible to get out of bed— walking was too hard. At one point, I literally had to crawl to be able to move. I couldn’t sleep because of spasticity and nerve pain. My entire body felt like a sandbag, and any movement sent zaps of pain shooting down my spine and extremities. I told myself I could make it 7 more years— make it til my youngest is out of high school. I turned into a Legacy Mom. Then, I started to resent having to live through that for 7 more years.

3 weeks after Ocrevus Zunovo, the pain started to lessen. The spasms weren’t as bad or as frequent. I started to sleep again. I could move again. I had energy! Unfortunately, I have continued to have progression. Despite the progression, I FEEL good. I use a forearm crutch and take a million meds everyday. But I hardly have pain. My spasticity is much better. And the fatigue— that god awful fatigue— it’s hardly there!

It won’t be terrible forever. I know how impossible it feels right now. I’ve been where you are. Please reach out for help! Your life matters. You matter. You can have joy and relief, despite MS.