Neutropenic and septic. Platelets at 4 as well, Bilirubin at 50 and ALT at 600, which is better news. switching regimen to R-ICE to avoid the risk of needing a liver transplant. In the back of an ambulance yesterday with a 40 degree temp. Infection due to significantly reduced Neutrophils. #FFS. 🤦🏻‍♂️

ALT down 400+ to 1396, platelets at 35 and bilirubin to a much more, important lower level. Pee doesn't look radioactive anymore, which is great news 👍🏼😂 We're on the right track folks, let's keep this going #NeverGiveUp

#ALT level over 2500. Acute liver damage due to toxic #chemotherapy treatment. No one warned me of this! 🤬😩

The wife's substack on the latest developments with my health and the effects it has on not just me. #MS #Lymphoma #PCNSL #Cancer open.substack.com/pub/otherrol...

#Thiotepa hit me like a freight train today. #Chemo is brutal on #MATRix delivery. #Methotrexate levels checked in blood. 2nd faster #Rituximab bag tomorrow, then home on Tuesday hopefully. Then back in 2 weeks after recovery period, to rinse and repeat with added stem cell collection!

#Cytarabine and #methotrexate antidote day 1 of 2.

#Rituximab done over 5hrs yesterday, no drama. We are go on the #Methotrexate now.

It's 5am. Very limited rest overnight. 1st night in hospital for chemo start this morning. Alien bed, environment, noise, temperature. And it begins shortly. See you on the other side folks. Fuck MS Fuck Lymphoma Fuck Cancer Fuck it all Good morning!! 🤬

I need to practice mindfulness more. It helps me but have been distracted lately. #mindfulness

#MS #Cancer #DMT tremlettsmsresearchexplained.wordpress.com/2026/04/23/i...

Scientists May Have Found a Way To Repair Nerve Damage in Multiple Sclerosis #Science #HealthandMedicine #Neurology #MultipleSclerosis #NerveDamage #MedicalResearch https://scitechdaily.com/scientists-may-have-found-a-way-to-repair-nerve-damage-in-multiple-sclerosis/

“ #Bowels and #bladders that treat you like a hostage. Every public outing is a tactical operation. Every seat, every loo, every escape plan scouted, rehearsed, prayed for.”: buff.ly/nZ8axto by goblinbloggeruk #disability #ChronicPain #MS #MultipleSclerosis #spoonie #disabled #horror #NEisVoid

It starts Tuesday. #NeverGiveUp #MATRix #Chemo #Cancer #PCNSL #Lymphoma www.cancerresearchuk.org/about-cancer...

#MS_Selfie Newsletter - Are you a carer? Do you help look after someone with MS? Is informal caring good or bad for the carer’s brain? => buff.ly/cFmqzwF

My wife's new substack on previous and current challenges, processing it and heading through it all step by step: #MS #Cancer #Support #Care #Leader #Coach otherrole.substack.com/p/i-expected...

#Ultramarathon off AGAIN this year 🤬 #Chemo takes priority apparently. Oh yeah, I can barely walk as well. Fuck MS Fuck Cancer Fuck it all.

PICC line in in 2 weeks, 12 weeks of aggressive chemo & monitoring,6 weeks rest, 3 week Stem Cell Transplant, 3 months isolation. Today has been overwhelming and heavy. It's coming. This is going to be brutal. #MS #Lymphoma #Grateful

www.bbc.co.uk/news/article...

Dexamethasone insomnia is ball breaking. Me no likey. Me no want anymore. Bring on the Chemo+Steroids then!

Go The Auzzies!!! mRNA Vaccine Targeting Epstein-Barr Virus (EBV) in Healthy Young Adults #mRNA #vaccine #EBV clinicaltrials.gov/study/NCT075...

There’s some lag time before the U.S. really starts falling behind in new preventive strategies, but we are rapidly approaching it. A Phase I trial of an mRNA vaccine against Epstein-Barr Virus has just launched in Australia, and this vaccine could prevent multiple sclerosis, among other things.

Hey @chiaraml.bsky.social, I've had to resign from @navigatems.bsky.social because of my health situation. I've spoken to @jenibaykoca.bsky.social about this. She's cool with that and understands. I have the greatest confidence you and the rest of the team will produce awesome results! #NeverGiveUp

For my birthday this year, I am fundraising for MS Hope for a Cure. Any amount is greatly appreciated. #MultipleSclerosis mshopeforacure.kindful.com?_gl=1*kg5q8p...

MS for 22 year's so far. Cancer confirmed 80mins ago. 45 years old. Fuck.

From the surgeon: 99% certainty t's a brain cancer Very positive of it being 'curable' with 6-12 months of chemo.

The entry point. MRI looks awful. #MS #Lymphonia

Neurosurgery you say?? Why not! Get the Bosch 18v charged and let's have a party in my skull! #Shit #MS #Lymphoma

Significant cerebellar relapse pour moi #ms #bollox www.healthcentral.com/condition/mu...

This week I'm supporting Multiple Sclerosis Awareness Week. MS is unpredictable and affects everyone differently. The theme is challenging MS assumptions and the impact these misconceptions can have. Living with MS is tough. No two days are the same, and many symptoms are invisible. #MSThinkAgain

“If you have #access to it, consult with people with #LivedExperience ..If you're not working with people who experience #accessibility barriers firsthand, you’re missing a vital voice.”: buff.ly/hniACoj from CreativeBloq #DisabledPeople #design #inclusive #disability #disabled

Received my PIP renewal through the post today, 1 week earlier than expected (well done DWP!) and they've extended it for 6, YES 6, years!! 😲 MS has some staying power that's fo sho!! 🎉😂👊🏼

I need my immune system reconstituted! Any folk on here with #MS who have any insights/experience on either #Cladribine (Mavenclad) or #Alemtuzumab (Lemtrada) that you'd be willing to share with me (and any one else who sees it in here!) 😁

DON'T DO THIS When relapsing hard, with huge head pain for 11 days, go the Emergency Dept as per direction from 111 service, to rule out a stroke by CT scan. We just walked out 5hrs later with a box of Codeine. #ThursdayAdvice #NoStroke

My #MS has now powered through 2 high efficacy, trusted DMTs, Natalizumab (Tysabri) and ofatumumab (Kesimpta). Only next step is stem cell transplant according to my Neuro yesterday. Luckily I've got an appt next month. See of I can persuade them to deliver CAR-T instead 👍🏼

Woman with three deadly autoimmune diseases has ‘remarkable’ recovery after stem cell therapy www.theguardian.com/science/2026...

After 22 years of living with #MS I just heard from my MS Nurse that I'm more than likely going through a #pseudo-relapse. WTAF is that about?!?! There are no stressors in my life to make that a reality! 🤬🤦🏻‍♂️🤷🏼‍♂️

#Ataxia and #MS. Winner winner chicken dinner for me! I just want my left arm and hand back. FFS 🤦

Yes please. #CAR-T #MS

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

Sublimely written. My takeaway as someone who is awful at pacing, whilst living with #MS- "Pacing with chronic illness is not about shrinking your world. It is about stabilizing your baseline so you are not constantly recovering from overexertion." So eloquently put and so easily understood 😀

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...

Feeling properly drunk today. #MS breaking my vestibular system and knocking me bandy, moreso than normal for some reason.

For the #MS network. Is this accurate to choose which activity to improve MS instability? - Primary goal is to improve balance and prevent falls, Choose #TaiChi. - To improve flexibility and balance simultaneously, choose #Yoga. - To increase core strength to support balance, choose #Pilates.

I'm half way through her memoir at the moment, "You With the Sad Eyes". The prologue is so relatable for those of us with #MS. This action of hers will make those who are left after her passing a tiny bit more manageable, kudos to her for talking about it. www.yahoo.com/entertainmen...

"The message you absorbed wasn’t “rest when you need to.” It was “rest when you’ve done enough to deserve it.” Those 2 things are not the same & your #NervousSystem learned the 2nd one so well that taking a #nap now feels like a moral #failure.": buff.ly/H6y38wY by @thethrivingspoonie.com #resting

MS fatigue is NOT just being tired. It can hit suddenly, feel overwhelming, and no amount of rest seems to fix it.

🚨 VIRUS ALERT: You likely carry JC virus (JCV) right now. Up to 70–90% of adults do. Usually harmless, but if immunity drops it can reactivate and cause PML, a rare, often fatal brain disease. #Bluesky #Science #Health #JCvirus #MS #Lupus #Neurology

Balance your #Threat, #Drive and #SelfSoothe systems and you will feel huge benefits. Psychology and common sense prevail.... I fail at this over and over again. I suffer. Be less me. balancedminds.com/three-system...

It's a perpetual life of grief, having #MS. A life we don't want but have no choice or control. Play the cards your dealt I say. #NeverGiveUp