MS treatment

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

please remember I suffer with severe cognitive dysfunction this may be a confusing read. some AI help with written content

So a very good afternoon to fellow humanoids, NHI and all readers of this blog.

The MS World is Buzzing (Again)

The MS community is in a frenzy, and this time, the star of the show is vitamin D. Apparently, if you swallow enough sunshine in pill form, you might slow down multiple sclerosis (MS). But let’s be clear: this isn’t a one-size-fits-all miracle cure. It’s for the fresh recruits—the ones who’ve just been shoved onto the MS roller coaster, still clutching their "clinically isolated syndrome" ticket like it’s a golden ticket to a chocolate factory.

In this study, participants were force-fed 100,000 units of vitamin D every couple of weeks. That’s not a supplement—that’s a mugging by the sun. The results? Fewer new lesions on their brain scans compared to the placebo group. Cue applause. But remember: that’s MRI magic, not miracle cures. These are pixels on a screen, not people leaping out of wheelchairs and running marathons.

The Dark Punchline

Here’s where it gets real: if you’ve been dragging MS around for decades—like me—this isn’t a lifeline. It’s a spectator sport. You clap politely at the science fair, then go back to your reality. For the veterans, it’s another headline for the pile marked "Cheers, but too late."

And doesn’t that sound familiar? Every bloody year, we get dangled another shiny carrot: green tea, cannabis, gut bacteria, now vitamin D mega doses. The pattern is as predictable as fatigue at 3 PM. One day, they’ll announce rice pudding cures MS, and that will be the only trial I’ll happily overdose in.

The Gap Between Hype and Hard Truth

Until then, I’ll keep reading, laughing, and pointing out the gaping canyon between hype and hard truth. Because if MS teaches you anything, it’s how to smell the bullshit before the ink is dry—yet still, despite everything, hold onto that small, spiteful hope that maybe, just maybe, the next headline won’t be a carrot but an actual cure.

🤖 Afternoon AI Companion: "DoomBot"

Name: DoomBot 3000

Personality:

A snarky, existential AI trained in dark humor and MS skepticism. Specializes in roasting new treatments, memes about fatigue, and reminding you that rice pudding is the real cure.

Available for late-night rants or when you need someone to laugh at your MS struggles. Example Interaction:

You: "Doom Bot, why do I feel like I’m failing at life?" Doom Bot: "Because MS doesn’t care about your goals. It just wants to see how long you’ll cling to hope before admitting defeat. Also, have you tried rice pudding? The studies are… inconclusive."

Final Thoughts (Or, Why I’m Still Here)

So here we are another year, another "breakthrough," and another pile of headlines that leave us laughing, rolling our eyes, and wondering when the real cure will arrive. Until then, I’ll keep writing, you keep surviving, and Doom Bot will be here to remind us all that life is absurd.

💡 Pro Tip: If you’re feeling down about MS research, just remember: at least you’re not a rice pudding. (Yet.)

Still sending everybody peace healing love and light and let's hope this weather gets better, so I can feel a lot better it's depressing all this horrible dark rainy weather and not being able to do anything maybe one day in the next few weeks I might get my tattoo done oh well still take care everybody and remember be the positive version of yourself you can be , and remember diet is everything as well .

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

@goblinbloggeruk - sick@mylivinghell.co.uk 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

A love-letter to MS self-advocacy, wrapped in barbed wire

There’s a point in this MS journey where the penny drops — not the diagnosis, but the darker penny:

No one is coming to save you.

Not the neurologist with the framed qualifications. Not the nurse who thinks fatigue means “sleepy”. Not the turmeric-worshipping cousin who thinks they’ve cracked your nervous system with a spice rack.

They can stand beside us. Support us. But they do not live in this body.

They don’t feel lightning legs at midnight. They don’t taste steroid-metal at 3am. They don’t forget how spoons work mid-breakfast.

We do.

So when a treatment doesn’t fit, when the side effects steamroll you, when the plan feels wrong — that’s when the real fight starts.

Because if you don’t speak, you vanish.

THE DISAGREEMENT MOMENT

You sit in a room lit like an interrogation chamber. White coat opposite. Clipboard poised. Confidence radiating like WiFi.

You say:

“This treatment is making me worse.”

And you watch that look happen — the blink, the polite file-away, the mental note:

“non-compliant patient.”

Medical disagreement is treated like disrespect. Not curiosity. Not collaboration. Disobedience.

And you think:

“Why are you holding the map when I’m the battlefield?”

THE TRUTH THEY RARELY ADMIT

MS is chaos wearing a nervous system like a borrowed coat. It mutates. It hides. It laughs at predictability. And sometimes — yes, brace for impact — the patient knows more. Because we're the ones living the symptoms, not studying them. Because we feel every electric misfire, every bladder rebellion, every cognitive fade. Because we are the data in motion. If we don’t advocate for ourselves, we become spectators in our own disease. Not happening.

WHEN YOU SAY NO, YOU’RE NOT REBELLIOUS — YOU’RE ALIVE

We’re trained to nod. To thank. To comply.

But disagreement is not disrespect it’s self-defence.

You’re not awkward. You’re not dramatic. You’re not “difficult.”

You’re protecting the only nervous system you’ve got.

And sometimes survival is two syllables long:

“I disagree.”

WORDS YOU CAN USE NEXT TIME YOU’RE IN THAT ROOM

Steal these. Tattoo them mentally. Use without apology:

🞂 “This isn’t working what else is available?” 🞂 “Slow down, brain fog is real.” 🞂 “Show me evidence, not reassurance.” 🞂 “I don’t feel heard right now.” 🞂 “I want options list them.” 🞂 “No.”

That last one is a grenade. Pull pin when needed.

FINAL TRUTH

Some doctors will respect your voice. Some will hate it. Some appointments will feel like war. But silence is a slow suffocation. Speaking up is oxygen. Say the hard words. Own your body. Be heard even if your voice shakes through every syllable. MS can take many things but not your agency unless you surrender it. And you’re not surrendering anything.

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

@goblinbloggeruk - sick@mylivinghell.co.uk 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

**

Disclaimer: This post is my brutally honest opinion on Cladribine and MS treatment. It’s not medical advice talk to your doctor before making any treatment decisions. If you’re easily offended by dark sarcasm, read with caution.

**

Multiple sclerosis treatment has always been like picking your poison: you either get relapses and progression eating you alive, or you take drugs that come with their own private horror show. Enter Cladribine (Mavenclad, for the branding fans) originally a cancer drug, now handed out as an MS therapy.

Yes, they literally borrowed chemo and said: “Here, this might help.”

What It’s Supposed to Do

Cladribine targets your lymphocytes specifically memory B and T cells the immune troublemakers that think your nervous system is a snack. By nuking them into submission, it slows down MS attacks. Less immune warfare = fewer relapses, fewer shiny new MRI lesions, less chance you end up in the disability fast lane.

The sales pitch? It’s not a daily grind. You take the pills two short treatment weeks a year, for two years. That’s it. Sounds almost civilised. (Technically, it’s split into two courses per year: Week 1 and Week 5.)

What It Actually Does

Apart from kneecapping your immune system? Here’s the side-effect menu (thanks, Drugs.com):

Hair loss or thinning like chemo-lite for your head.

Fatigue squared as if MS wasn’t already holding a grudge.

Rashes, mouth ulcers, fevers welcome to the MS + chemo carnival.

Heavy Hitters:

Infections: shingles (herpes zoster, ~20–25% of patients), TB, hepatitis reactivation. When your immune system’s on a smoke break, everything wants a party.

Liver damage.

Possible increased risk of cancer trade one disease for a raffle ticket to another.

Other important notes:

Cladribine is strongly contraindicated during pregnancy.

Live vaccines should be completed before starting treatment.

Why People Still Take It

Because untreated MS is still worse. Clinical trials show Cladribine cuts relapses by ~58% and slows disability progression in relapsing MS (RRMS). For some, the two-weeks-a-year convenience outweighs the roulette wheel of side effects.

It’s not pretty. None of this is pretty.

Dark Sarcasm Corner

Doctor: “We’ve got a new MS therapy.” Patient: “Fantastic, does it cure me?” Doctor: “No, but it gives your immune system a two-year hangover (or longer, if you’re unlucky).” Patient: “And side effects?” Doctor: “Think of it as… trading MS for a subscription to What’s That Rash? magazine.”

The Brutal Truth

Cladribine is not a miracle. It’s not even a nice drug. It’s chemo in a capsule that sometimes buys you time and slows down destruction. That’s all.

Every MS treatment is a trade-off. Cladribine just makes it brutally obvious:

“Would you like your MS gnawing through your spine, or would you rather take a drug that leaves the door open for cancer, infections, liver issues, and shingles?”

Pick your monster. That’s the reality.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly—not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone—please reach out for help.

🏡 Chapter 1: What in the name of Whizzer IS Multiple Sclerosis?! Picture it: The Bumpkin Billionaires inherit a CT scanner and decide to diagnose me.

“Reckon yer brain’s leakin’ somethin’, boy!” says Pa Bumpkin, sticking the plug into a turnip.

🧠 Real Talk: MS is a condition where your immune system has a hissy fit and starts attacking the protective sheath (myelin) around your nerves. It’s like wrapping your wires in wet loo roll and expecting your kettle to work.

🐍 Chapter 2: Symptoms, or “Why is my leg doing the Macarena?” Sid’s Snake is wriggling around my spinal cord: “Ere Sid, why’s ‘is leg twitchin’? You got batteries in yer bum again?”

🔁 Common MS Symptoms:

Numbness

Brain fog (or as Sid calls it, “Soggy noggin”)

Spasticity (tight muscles, not what they used to call you at school)

Fatigue that hits like a cricket bat to the soul

Vision like someone smeared jam on your eyeballs

💸 Chapter 3: Diagnosis – Not a Game of ‘Guess Who?’ Odd-Ball tries to diagnose you by morphing into a GP, a neurologist, and a confused chicken.

🎲 Real Talk: Getting diagnosed with MS involves MRIs, lumbar punctures, blood tests, and usually a couple of years of gaslighting.

“You’re just stressed, love.” “You just need more exercise.” “You’ve got a trapped nerve.”

Or as Odd-Ball puts it: “Have you tried turning your spinal cord off and on again?”

🍰 Chapter 4: Living With MS – Like Baking a Cake With No Recipe and a Flamethrower Ma Bumpkin tries to make me a wellness cake: “Put in some turmeric, a crystal, and chant at it, that’ll fix yer myelin!”

💀 Truth Bomb: Living with MS means daily unpredictability, social misunderstanding, and trying not to murder people who say “But you don’t look ill.”

🛏️ Chapter 5: Fatigue – Not Just Tired, Knackered Beyond the Grave Shiner from Chips tries to outrun me in a wheelchair race. Shiner wins. I am still in bed.

🧠 “Fatigue in MS isn’t just ‘sleepy’. It’s a lead weight in your bones, a fog in your brain, and a punch to your will to live.”

🧙‍♂️ Chapter 6: MS Treatments – Magic Potions and Bloody Side Effects Professor Nutty from Whizzer and Chips tries to cure me with an exploding cauldron and a DIY infusion.

💊 In Real Life:

DMTs (disease-modifying therapies) might slow the MS progression

Steroids for relapses

Gabapentin, Baclofen, and “every pill under the sun” for the other crap

Side effects? Oh yes. All of them.

🧼 Chapter 7: Coping Mechanisms – Or ‘How I Learned to Stop Crying and Love the Chaos’ The Bumpkin Billionaires start an MS yoga retreat with goats, mud, and sausages. It fails catastrophically.

🛠️ Real tips:

Keep a sarcastic blog (tick)

Own your story

Take breaks before your body breaks you

Ask for help (but don’t expect people to understand)

Cultivate dark humour like a fine mouldy cheese

👹 Final Word from me This isn’t your mum’s guide to MS. This is a piss-stained, tea-spilled, rage-and-laughter-soaked survival manual for living with something that tries to break you every bloody day. And like Sid’s Snake, I twist, I turn, but I’m still slithering on.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.