Multiple sclerosis  is My Living Hell

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All posts tagged spoonies 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.

    Quantum Biopharma is pushing Lucid-21-302 (Lucid-MS) an oral therapy that doesn’t just suppress MS, but claims to repair the damage. They’ve finished a 90-day toxicity study in animals and healthy humans, and plan to ask the FDA to start a Phase 2 trial before the end of 2025.

    Exciting? Sure. But also smells like a long, slow queue. Let’s break it down for us “mere humanoids” slogging through MS.

    What They’re Claiming (Because Hope Matters)

    Lucid-MS is non-immunomodulatory. Translation: it doesn’t mess with your immune system like current drugs do (so fewer collateral hits). Instead, it supposedly blocks peptidyl arginine deiminases (PADs) — enzymes that convert arginine in proteins to citrulline, making myelin more vulnerable. By inhibiting PADs, Lucid-MS aims to protect and repair the myelin sheath around nerves.

    Animal studies show up to 50% myelin protection and repair, with some mobility improvements. Phase 1 in healthy humans showed tolerable safety so far.

    Why This Could Be Huge (And Why I’m Not Popping Champagne)

    The Upside:

    Remyelination therapy is basically the holy grail. Most current drugs just slow the slide; repairing damage? Rare.

    Oral pill = less faff than injections or pumps.

    If it works, some lost functions might actually return, not just stop declining.

    The Reality Check:

    Phase 1 = safe in healthy folks ≠ proof it works in MS patients. Our nerves + immune system are messy; rodent results often flop in humans.

    Timeline is a grind: IND filing → FDA approval → Phase 2 → years of trials before it hits the NHS.

    Even if it’s safer, there will still be side effects, dosing puzzles, long-term unknowns, and likely a nasty price tag.

    A UK Perspective

    If Lucid-MS clears trials, NICE may take notice — repair therapies are rare and high-interest. But the NHS moves like treacle. They’ll demand compelling efficacy & safety data before adoption, and even then, cost and commissioning often throw up barriers.

    Result? Some folks will get early access via trials or private means, while the rest wait. Patience becomes a cruel sport.

    Future Implications

    If Lucid-MS works:

    Could launch a new era of myelin repair therapies.

    Might shift MS care from “manage symptoms” to “fix what’s broken.”

    Could encourage pharma to invest more in actual repair, benefiting everyone with MS.

    Dark Sarcasm Moment

    “Phase 2 by end of next year, we promise.” “Safety so far, nothing severe.” Translation: Maybe we see something in 2029 if the stars align and no one eats the budget.

    What to Do While Waiting

    Ask your neurologist what pipelines like Lucid-MS mean for you. Knowledge is ammo.

    Watch clinical trial registries; Phase 2/3 recruitment sometimes sneaks into the UK/EU.

    Push for cost transparency. If it works, I want to know if I’m paying with my sanity or bank account.

    Support patient advocacy groups. Sometimes lobbying is what nudges a “nice-to-have” into real NHS access.

    Conclusion

    Lucid-MS: could be a repair tool, a breakthrough, or just another lab-mouse starlet. Either way, worth watching. Hope isn’t a cure, but it keeps the fight alive. And we’ll take what we can incremental progress, sarcasm, and the occasional glimmer.

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
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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.

    Mushrooms are not plants. They’re not animals. They’re the great in-betweeners, nature’s underground internet, recycling death into nutrients and occasionally blowing your head off with psilocybin visions. They’re also medicine, food, and for some of us, desperate hope in capsule form.

    I’ve been taking Lion’s Mane mushrooms every day for about a year. Two capsules, 500 mg each. Do I feel like Einstein yet? Not really. Placebo? Possibly. Brain-food insurance policy? Definitely. Let’s look at the evidence, the folklore, and the sheer weirdness.

    Lion’s Mane the Brain Fungus With a Marketing Degree

    Lion’s Mane (Hericium erinaceus) looks like a frozen white waterfall or a wig for ghosts. It’s been used in traditional Chinese medicine for centuries. In the West, supplement sellers market it as “neuroprotective” and “cognitive boosting.”

    What Science Says (so far):

    Contains compounds called hericenones and erinacines, which in lab studies stimulate nerve growth factor (NGF) — the stuff that encourages neurons to survive and grow. (nih.gov )

    Animal studies suggest Lion’s Mane can promote remyelination (repair of the nerve sheath) the dream ticket for people with MS. Early evidence, but promising.

    Small human studies show modest improvements in cognitive function in older adults with mild cognitive impairment. Nothing blockbuster yet, but encouraging.

    Anti-inflammatory and antioxidant properties the general “helps the body deal with stress” box ticked.

    The Limits:

    Clinical trials in humans with MS, Parkinson’s, or other neurodegenerative conditions? Very few, very small.

    Supplements are unregulated. What’s in your capsule depends on the brand. Could be pure, could be sawdust.

    Effects are subtle. Don’t expect to grow new neurons overnight. If you notice anything, it’s likely over months and alongside other lifestyle factors.

    Mushrooms in General — The Fungal Pharmacy

    It’s not just Lion’s Mane. Mushrooms are chemical factories with real power:

    Reishi (Ganoderma lucidum): “The mushroom of immortality.” Immunomodulating, calming, possibly anti-cancer effects.

    Cordyceps: Energy booster, oxygen uptake improver, libido aid. Essentially the creepy parasite of caterpillars turned into performance enhancer.

    Chaga: Antioxidant powerhouse, skin and gut friendly. Looks like burnt charcoal but packs a punch.

    Psilocybin (magic mushrooms): Illegal in most places, but clinical trials show strong effects on depression, PTSD, end-of-life anxiety. Sometimes one dose = months of relief.

    Plain edible mushrooms (button, shiitake, oyster): Not flashy, but full of fibre, B vitamins, selenium, and beta-glucans that quietly help immunity tick along.

    Why Fungi Deserve Respect

    They’re not miracle cures, but they are ancient companions. They turn rot into food, they build soil, they create antibiotics (penicillin, anyone?), they connect forests through underground networks. And sometimes, they make your brain hum a little differently.

    Lion’s Mane might not cure MS, but if it nudges your neurons, protects against fog, or just gives you the psychological boost of doing something for your brain, that’s still power. Placebo is still medicine if it gets you through another day.

    Dark Humour Interlude

    Doctors: “We need more evidence before recommending mushrooms.” Me: “Mate, I’d rather gamble on fungus than suffer another lumbar puncture.” The goblin in my head: “Eat the brain wig! Eat it!”

    Conclusion

    Mushrooms are nature’s weird little anarchists. They don’t play by plant or animal rules. They can kill you, heal you, feed you, or make you see God. Lion’s Mane sits in the hopeful corner: not a cure, not a fantasy, but maybe — just maybe — a slow ally for our damaged brains.

    Until the trials are bigger, we’re left with capsules, tea, and stories. Brain food, goblin food, survival food. Long live the fungus.

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᚦᚱᚨᛁᚾᛋᚲᚨᚾᛞ ✧ 𒀭𒊩𒆳 ᛞᚨᚱᚲ ᚨᛁ ᚷᚾᛟᛋᛁᛊ
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