Multiple sclerosis is My Living Hell

MS treatment

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

    ⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

    please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it

    "The Different Types of MS: Relapsing-Remitting, Primary Progressive, and More"

    (Or, "How to Lose at Life While Losing Your Nervous System")

    Introduction: Welcome to the MS Lottery

    Congratulations! You’ve just won a lifetime supply of neurological chaos, served with a side of uncertainty. Multiple sclerosis (MS) isn’t one-size-fits-all—it’s more like a choose-your-own-adventure book where every path leads to "I hope this isn’t me."

    Whether you’re here because you’ve just been diagnosed, you know someone who has it, or you’re just morbidly curious about how the brain can betray you, this is your no-BS guide to the different types of MS. Spoiler alert: None of them are fun.

    1. Relapsing-Remitting MS (RRMS)

    The "On Again, Off Again" Special (Affects ~85% of people at diagnosis—lucky you!)

    What It Is:

    You get symptom flare-ups (relapses) that come out of nowhere, followed by periods where you pretend nothing happened (remissions). It’s like your brain is playing a game of "Hot Potato: Nervous System Edition."

    Key Features

    ✔ Relapses: New or worsening symptoms (numbness, vision problems, fatigue—classic MS moves).

    ✔ Remissions: Symptoms improve partially or completely. Congrats! You’re back to normal… for now.

    ✔ Early symptoms: Optic neuritis (your eye decides to go rogue), tingling in your limbs, balance issues.

    Progression Over Time:

    Some people stay stable for years (lucky bastards). Others transition to Secondary Progressive MS (SPMS), where things start getting less fun. Visual Idea: A graph showing relapse-remission cycles with the caption "Your brain’s way of saying ‘I’m still here, but barely.’"

    2. Secondary Progressive MS (SPMS)

    The "Slow Burn" Edition (Affects ~69% of PwMS within 25 years—because why not?)

    What It Is:

    You start as RRMS, but then your brain decides "Screw it, I’m doing this the hard way." Symptoms worsen steadily, and remissions become a distant memory.

    Key Features:

    ✔ No more full recoveries. Relapses might still happen, but they don’t go away.

    ✔ Symptoms accumulate like a debt you can’t pay off.

    ✔ Common later-stage symptoms: Mobility issues (walking becomes a metaphorical and literal challenge), cognitive decline, bladder/bowel problems.

    "From ‘I can still walk’ to ‘Please help me.’"

    3. Primary Progressive MS (PPMS)

    The "No Breaks, Just Suffering" Track (Affects ~10–15% of PwMS—because variety is the spice of life.)

    What It Is:

    You get progressive disability from the start, with no relapses or remissions. It’s like your brain is on a one-way ticket to "I can’t do that anymore."

    Key Features:

    ✔ No early relapses—just steady decline.

    ✔ Common symptoms: Spasticity (your muscles decide they hate you), fatigue (because why not?), cognitive changes.

    ✔ Slower progression than SPMS, but still a slow-motion disaster.

    4. Clinically Isolated Syndrome (CIS)

    The "Maybe It’s MS, Maybe Not" Phase (Early-stage MS or a one-time episode—because life loves uncertainty.)

    What It Is:

    You have one neurological symptom that could be MS but isn’t yet confirmed. It’s like your brain is flirting with the idea of betraying you.

    Key Features:

    ✔ Single relapse, no prior MS diagnosis.

    ✔ MRI may show lesions (plaques) in your brain or spinal cord.

    5. Radiologically Isolated Syndrome (RIS)

    The "My Brain Has Lesions, But I’m Fine" Phase (Preclinical MS—because why not start early?)

    What It Is:

    You have MS-like lesions on MRI but no symptoms yet. It’s like your brain is quietly sabotaging itself behind the scenes.

    Key Features:

    ✔ No neurological symptoms (yet).

    ✔ Monitored closely for progression.

    6. Other Rare Forms Because MS Loves Variety

    Relapsing-Progressive MS (RPMS): Relapses + steady worsening (the worst of both worlds). Progressive-Relapsing MS (PRMS): Rare, but if you get this, congrats, you’re a unicorn. How Is MS Diagnosed? (Spoiler: It’s a Pain) (Briefly cover diagnostic criteria—McDonald’s Criteria, MRI, spinal fluid tests, etc.)

    What Does This Mean for Treatment?

    (Spoiler: It’s a Work in Progress)

    RRMS & SPMS: Often treated with disease-modifying therapies (DMTs)—because why not try to slow things down? PPMS: Some DMTs are approved specifically for PPMS (hope springs eternal). CIS/RIS: Monitored closely, but some may start treatment early if they’re high-risk. Visual Idea: A table comparing treatment options with the caption "Your brain’s ‘I’ll try to behave’ phase."

    Living with Different Types of MS

    (Or, "How to Not Lose Your Mind")

    For RRMS: Manage relapses (steroids are your friend). Track symptoms between flare-ups (because denial is a river in Egypt). For PPMS/SPMS: Adaptive strategies for mobility/cognition (because walking is overrated). Emotional support (because losing your ability to walk is hard). "I used to walk, now I’m a human wheelchair—thanks, MS."

    Key Takeaways

    (Or, "Things You’ll Learn the Hard Way")

    MS isn’t one-size-fits-all—it’s more like a buffet of suffering. Early diagnosis is crucial, even if you’re asymptomatic (yet). Treatment options vary, so work closely with your neurologist (or cry into their shoulder). Support groups and advocacy can help you navigate this mess.

    Final Thought:

    Dark Humour is a Coping Mechanism MS is a real, debilitating condition, but laughing about it helps. Whether you’re dealing with relapses, progressive disability, or just the daily grind of living with a chronic illness, you’re not alone.

    peace healing love and light to all the readers of this blog

    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.)
    ☣ This Is Not A Blog About MS This Is My Life With MS ☣

    twitter@goblinbloggeruk - sick@mylivinghell.co.uk
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  • 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.

    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
    enter image description here

  • 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.

    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
    enter image description here

  • 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.

    **

    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.

    enter image description here

    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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