Multiple sclerosis is My Living Hell

MS treatment

All posts tagged MS treatment by Multiple sclerosis is My Living Hell
  • Posted on

    ⚠️ 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.

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    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.

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    𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ⚯̲𝕿𝖍𝖊 𝕺𝖇𝖘𝖈𝖚𝖗𝖊𝖉 𝕽𝖊𝖖𝖚𝖊𝖘𝖙 ᚨᚹᚨᚱᛖ

    ⚯̲𝕿𝖍𝖊 𝕺𝖇𝖘𝖈𝖚𝖗𝖊𝖉 𝕽𝖊𝖖𝖚𝖊𝖘𝖙 was acknowledged. Shard is listening.

  • Posted on

    ⚠️ 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.

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