MS Sucks 🎗

#MultipleSclerosis #ChronicIllness

USPS: “We’re broke, stamps need to go up another 20¢.” Also USPS: My package went Providence → Springfield → Providence → Springfield, adding roughly 175 completely unnecessary miles on a tour of New England to its journey. Have we considered just… sending shit toward its destination?

My postage printer is developing a personality and I don’t like it. I like my Rollo printer for the most part, but the self-congratulatory label wasting could go. I bought this thing to print postage, not to watch it stroke its own ego every time it updates.

CAR-T for #MS hit an important safety wall www.reuters.com/business/hea...

www.youtube.com/watch?v=62vs... by @brandon-beaber.bsky.social

www.nature.com/articles/s44...

I’ve been a little quiet lately. Buried in a project that has evolved a few times and has become my fav project yet. #MS has a way of reminding you that your brain isn’t always playing on the same difficulty level so I set out to build something to eliminate some friction. 🤓 🧡

Mia had a service training session today. After 45 min she snuck away to find a cool, quiet place to nap under the shrubs. I do the same thing when the #MS fatigue hits. Although, I try to avoid the whole crawling under the shrubs part 😆

A review of PIP is underway in the UK and those of us with #MS have been invited by @mssocietyuk.bsky.social to get involved. If you have the time & energy, please feel free to contribute as you wish 😀 www.mssociety.org.uk/research/new...

My pal Dave got dxed w #MultipleSclerosis while in the Navy. He's a leader in the Illinois MS community & helped me get my life back on track. Here he is in his "Proud uncle of a Marine" cap. Is there a vet in your life who has MS? Find support for #veterans w MS: tinyurl.com/te65xnek #disability

Did you know that the UK MS Register host the expression of interest for the Octopus trial? This is a revolutionary trial that will transform the way we test treatments for Progressive Multiple Sclerosis (MS). You can read the latest update from the trial here: blog.msregister.org/octopus-upda...

By analyzing levels of the protein sNfL in blood serum, researchers at @ucl.ac.uk have identified two distinct subtypes of multiple sclerosis (MS), which appear to progress at different rates and begin in different brain regions. #MultipleSclerosisResearch #MSResearch

Multiple Sclerosis Diagnostic Criteria Explained in graphical form youtu.be/GSHrMn9w0lM?...

Interesting take on Gen-X physiology — feels accurate. Grew up unsupervised taking apart TVs, VCRs, Atari, kitchen appliances… then got yelled at/hit with a belt, wooden spoon, or that wooden beach chair arm that every house seemed to have. Wouldn't trade it for anything 😂 youtu.be/G5YmIqYSqA0

Thanks @theabilitytoolbox.bsky.social for adding our MS Sucks journal to your site. Follow them and check out their resources for people with disabilities. theabilitytoolbox.com

FDA Rejects Tolebrutnib by @brandon-beaber.bsky.social www.youtube.com/watch?v=9LFd...

B-Cell Eviction Day! It was 10° F when I left the house this morning. Usually going out in this temp is a big NOPE for me, but I went with enthusiasm because I’m so over this crap gap.

Downloaded life. Got MS instead. 0/5 stars. Would not recommend.

multiplesclerosisnewstoday.com/news-posts/2...

@griffjc.bsky.social Please don’t block! My name is Brian, I’m a veteran and have #MS. I’m FUNDRAISING for the MS Society and doing squares for the CFP Championship game $20 a square. Half to pot half to fundraiser benefiting the MS Society. Would you like any?

New to #MS and your doc just handed you a wad of pamphlets and said “go home, choose one and let me know”? Here’s a plain-English breakdown of the stronger MS treatment options — specifically the CD20 meds — and what they attempt to do. mssucks.co/l

New Year, same symptoms. Same gremlin immune system refusing to read the god damn manual. If you made it to midnight, congrats 🥳. My New Year Eve tradition, like many other days of the year, kicked off around 7PM when I took my meds and crawled under my weighted blanked. #MS still sucks in 2026

Does Salt Cause Multiple Sclerosis? youtu.be/bu_kqoKuKSw?...

MS drug commercials live in a fantasy world. Rooftop DJs. Rock climbers. Endless energy. Zero symptoms. Reality? Fatigue, heat intolerance, brain fog, medical debt, and just trying to make it through the damn day. These ads do no favors for people with #MS mssucks.co/commercials

Happy Monday. 🌈✨ I’ve officially completed my big achievement for the day: putting on socks and shoes. That heroic feat alone has me ready for a nap. #MSSucks

Alcohol & Multiple Sclerosis: Can You Drink? youtu.be/mmDyu_GT3aI?...

PIPE-307, a “promising” remyelination drug just face-planted in Phase 2. Missed the primary endpoint, missed the secondary endpoint, and basically gave us nothing but a shrug. Hope is great, but data is louder — and this data said “nah.” ir.contineum-tx.com/news-release...

youtu.be/HOTDtZQLo2k?...

Good afternoon- lovely guests of the tea party. I'll be hosting a Charity Stream For Multiple Sclerosis for MSTrust on the 05/12/25 along with friends, Find the details of this invitation below! #CharityStream #MSTrust #twitch #warhammer40k #gaming #Charity #MultipleSclerosis

As a GenX’er this cracks me up because it’s so true 😆 youtu.be/t2uzCYPcE3I?...

Hello everybunny! My wife, Dragon will be hosting a charity stream for the MS (Multiple Sclerosis) Society! I'd really appreciate it if friends could join in and watch or even lurk during this time! www.twitch.tv/theclockwork... #twitchstreamer #twitch #pngtuber #vtuber #audhd #disabled #ms

Justice has been served. After years of Facebook tracking my every move, which led me to close the account, I’ve finally been compensated—with a life-changing $4.01. I might retire. Or buy half a latte and reflect on my newfound wealth 🤷🏻‍♀️

Mia’s officially home — 3 months old, cute as hell, and already running the place. She came all the way from Mississippi, thanks to an amazing rescue that literally hopped in a van last night and drove 1037 miles to get her to me.

10 Strange Things About Multiple Sclerosis youtu.be/FyTTRLjEpjM?...

📚✨Explore the realities and triumphs of navigating life with an invisible chronic illness. Discover the insights and resilience within these pages. Learn More >>> amzn.to/49kKN4B #Fibromyalgia #InvisibleIllness #SurvivalStories

#MS fatigue isn’t “being tired.” It’s your body burning through energy faster than a crackhead through a dime bag. Yeah, I said it. New post → mssucks.co/k #MSSucks #MSFatigue

For this #MSFriday some light reading and coffee. Glad it’s the last day here. Woke up this morning and my immune system choose vilonece. Ready to go back home to my own bed.

www.youtube.com/watch?v=oxd3... Dr. Beaber always does a great job translating the data for us medically challenged. Follow him if you already don't: @brandon-beaber.bsky.social

Rest stop 1: 25 miles Please share this special message and link: mssociety.donordrive.com/participant/... I will personally match every donation received today to my fight, up to $10,000! #NeverStopNeverQuitForThem #MultipleSclerosis #MS #ThisisMS #nationalmssociety #defeatmsoregon

Few days in Bermuda. The sea is calm, the sky is dramatic, and my MS is currently pretending to behave. Let’s see how long that lasts, it’s early 😆 #MSLife #MSSucks

I bet I've hidden more dead bodies than you have. New Blog Post: When #MS becomes your crappy boss. Read ⮕ mssucks.co/j

Just $70 short of my goal, in case Multiple Sclerosis research is a cause you support. #BikeMS events.nationalmssociety.org/participants...

@itreallydoes.com @elizabethjacobs.bsky.social @vivianofthesierras.bsky.social www.theguardian.com/society/2025...