#multiplesclerosis — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #multiplesclerosis, aggregated by home.social.
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For reference, I pay about £80 for 2 month’s supply of oil, plus £50 consultation fee every 6 months. That’s a private clinic, so it would be a lot cheaper for the NHS to supply and, I’d argue, would actually save money. It’s political, isn’t it? They won’t allow it to be prescribed because it’s political.
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I used to be on a disease modifying drug that cost ££££ a month on the NHS. I’m not on that anymore, but they still aren’t able to prescribe a perfectly legal and proven therapy. Why??
The law was changed by Theresa May, and it perhaps won’t surprise you to learn that her husband is one of Europe’s biggest investors in cannabis cultivation.
Make it available, FFS.
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I have #MultipleSclerosis which causes muscle spasms in my legs that keep me awake. I take drugs to try and control this: baclofen, gabapentin. None work as well as cannabis. It’s legal in this country, but next to impossible to get on NHS prescription. When I finally convinced my neurologist to write me a (private) prescription, the estimated cost for 2 months supply was nearly £1000. I now use a private clinic at a fraction of that cost, but it’s absurd.
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From the AOF Studio New from the Studio: My Lesions Are Real. Your “Hallucinations” Are Just Bad Maths https://www.artoffaceless.com/my-lesions-are-real-your-hallucinations/?utm_source=dlvr.it&utm_medium=mastodon #MultipleSclerosis #SPMS #ChronicIllness #MentalHealth #InvisibleIllness
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Please boost: My spouse can no longer work due to #MultipleSclerosis, #MCAS and other complications; please help our queer family survive.
https://chuffed.org/project/kat
Our most urgent needs:
$125/172 for groceries
$0/150 cat food and litter for 2 cats
$0/60 medicine
$0/60 dog food (sensitive skin and stomach)
Venmo: @bohe2389
Cashapp: $bohe2389 -
SA man forced to spend night in hospital ED due to lack of access cabs
By Josephine LimA multiple sclerosis patient says he waited three hours for an access cab, only to be told in the middle of the night one would not be available, forcing him to spend the night at an Adelaide emergency room.
https://www.abc.net.au/news/2026-05-12/adelaide-man-waits-in-hospital-for-access-taxi/106669528
#PeopleWithDisability #Disabilities #TaxisandRideSharingServices #MultipleSclerosis #JosephineLim
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SA man forced to spend night in hospital ED due to lack of access cabs
By Josephine LimA multiple sclerosis patient says he waited three hours for an access cab, only to be told in the middle of the night one would not be available, forcing him to spend the night at an Adelaide emergency room.
https://www.abc.net.au/news/2026-05-12/adelaide-man-waits-in-hospital-for-access-taxi/106669528
#PeopleWithDisability #Disabilities #TaxisandRideSharingServices #MultipleSclerosis #JosephineLim
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SA man forced to spend night in hospital ED due to lack of access cabs
By Josephine LimA multiple sclerosis patient says he waited three hours for an access cab, only to be told in the middle of the night one would not be available, forcing him to spend the night at an Adelaide emergency room.
https://www.abc.net.au/news/2026-05-12/adelaide-man-waits-in-hospital-for-access-taxi/106669528
#PeopleWithDisability #Disabilities #TaxisandRideSharingServices #MultipleSclerosis #JosephineLim
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SA man forced to spend night in hospital ED due to lack of access cabs
By Josephine LimA multiple sclerosis patient says he waited three hours for an access cab, only to be told in the middle of the night one would not be available, forcing him to spend the night at an Adelaide emergency room.
https://www.abc.net.au/news/2026-05-12/adelaide-man-waits-in-hospital-for-access-taxi/106669528
#PeopleWithDisability #Disabilities #TaxisandRideSharingServices #MultipleSclerosis #JosephineLim
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SA man forced to spend night in hospital ED due to lack of access cabs
By Josephine LimA multiple sclerosis patient says he waited three hours for an access cab, only to be told in the middle of the night one would not be available, forcing him to spend the night at an Adelaide emergency room.
https://www.abc.net.au/news/2026-05-12/adelaide-man-waits-in-hospital-for-access-taxi/106669528
#PeopleWithDisability #Disabilities #TaxisandRideSharingServices #MultipleSclerosis #JosephineLim
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MS isn't always a 'brave journey'—sometimes it's just a 14th meltdown and a broken internal thermostat. 🌡️ If you’re done with the toxic positivity, these captions are for you. No filters, just the messy, wobbly truth.
#SpoonieLife, #MultipleSclerosis, #ChronicIllness, #MSAwareness, #InvisibleIllness
Read more: https://mooddrafts.com/ditch-the-fluff-real-ms-captions-for-your-darkest-days/
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MS isn't always a 'brave journey'—sometimes it's just a 14th meltdown and a broken internal thermostat. 🌡️ If you’re done with the toxic positivity, these captions are for you. No filters, just the messy, wobbly truth.
#SpoonieLife, #MultipleSclerosis, #ChronicIllness, #MSAwareness, #InvisibleIllness
Read more: https://mooddrafts.com/ditch-the-fluff-real-ms-captions-for-your-darkest-days/
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MS isn't always a 'brave journey'—sometimes it's just a 14th meltdown and a broken internal thermostat. 🌡️ If you’re done with the toxic positivity, these captions are for you. No filters, just the messy, wobbly truth.
#SpoonieLife, #MultipleSclerosis, #ChronicIllness, #MSAwareness, #InvisibleIllness
Read more: https://mooddrafts.com/ditch-the-fluff-real-ms-captions-for-your-darkest-days/
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MS isn't always a 'brave journey'—sometimes it's just a 14th meltdown and a broken internal thermostat. 🌡️ If you’re done with the toxic positivity, these captions are for you. No filters, just the messy, wobbly truth.
#SpoonieLife, #MultipleSclerosis, #ChronicIllness, #MSAwareness, #InvisibleIllness
Read more: https://mooddrafts.com/ditch-the-fluff-real-ms-captions-for-your-darkest-days/
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SA man forced to spend night in hospital ED due to lack of access cabs
By Josephine LimA multiple sclerosis patient says he waited three hours for an access cab, only to be told in the middle of the night one would not be available, forcing him to spend the night at an Adelaide emergency room.
https://www.abc.net.au/news/2026-05-12/adelaide-man-waits-in-hospital-for-access-taxi/106669528
#PeopleWithDisability #Disabilities #TaxisandRideSharingServices #MultipleSclerosis #JosephineLim
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SA man forced to spend night in hospital ED due to lack of access cabs
By Josephine LimA multiple sclerosis patient says he waited three hours for an access cab, only to be told in the middle of the night one would not be available, forcing him to spend the night at an Adelaide emergency room.
https://www.abc.net.au/news/2026-05-12/adelaide-man-waits-in-hospital-for-access-taxi/106669528
#PeopleWithDisability #Disabilities #TaxisandRideSharingServices #MultipleSclerosis #JosephineLim
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SA man forced to spend night in hospital ED due to lack of access cabs
By Josephine LimA multiple sclerosis patient says he waited three hours for an access cab, only to be told in the middle of the night one would not be available, forcing him to spend the night at an Adelaide emergency room.
https://www.abc.net.au/news/2026-05-12/adelaide-man-waits-in-hospital-for-access-taxi/106669528
#PeopleWithDisability #Disabilities #TaxisandRideSharingServices #MultipleSclerosis #JosephineLim
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SA man forced to spend night in hospital ED due to lack of access cabs
By Josephine LimA multiple sclerosis patient says he waited three hours for an access cab, only to be told in the middle of the night one would not be available, forcing him to spend the night at an Adelaide emergency room.
https://www.abc.net.au/news/2026-05-12/adelaide-man-waits-in-hospital-for-access-taxi/106669528
#PeopleWithDisability #Disabilities #TaxisandRideSharingServices #MultipleSclerosis #JosephineLim
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SA man forced to spend night in hospital ED due to lack of access cabs
By Josephine LimA multiple sclerosis patient says he waited three hours for an access cab, only to be told in the middle of the night one would not be available, forcing him to spend the night at an Adelaide emergency room.
https://www.abc.net.au/news/2026-05-12/adelaide-man-waits-in-hospital-for-access-taxi/106669528
#PeopleWithDisability #Disabilities #TaxisandRideSharingServices #MultipleSclerosis #JosephineLim
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Please boost: My spouse can no longer work due to #MultipleSclerosis, #MCAS and other complications; please help our queer family survive.
https://chuffed.org/project/kat
Our most urgent needs:
$125/172 for groceries
$0/150 cat food and litter for 2 cats
$0/60 medicine
$0/60 dog food (sensitive skin and stomach)
Venmo: @bohe2389
Cashapp: $bohe2389 -
Please boost: My spouse can no longer work due to #MultipleSclerosis, #MCAS and other complications; please help our queer family survive.
https://chuffed.org/project/kat
Our most urgent needs:
$125/172 for groceries
$0/150 cat food and litter for 2 cats
$0/60 medicine
$0/60 dog food (sensitive skin and stomach)
Venmo: @bohe2389
Cashapp: $bohe2389 -
UK MS-havers, are you on https://ukmsregister.org ?
I only signed up last month, and I've no idea if they contact you when there is a new questionnaire available. I'm happy to help with data but it isn't super clear!
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‘People assume we’re grifters’: disabled Britons report rise in abuse over blue badges https://www.theguardian.com/world/2026/apr/29/disabled-britons-report-rise-in-abuse-blue-badges #Disability #Fibromyalgia #MultipleSclerosis #LearningDisability #Osteoarthritis #Carers #UkNews
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CW: MS grumbles
My body isn’t playing ball tonight. Spasms and shocks galore.
Gotta get better at using dictation. It has taken me way too long to type this. Stupid wetware.
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Please boost: My spouse can no longer work due to #MultipleSclerosis, #MCAS and other complications; please help our queer family survive.
https://chuffed.org/project/kat
Our most urgent needs:
$125/172 for groceries
$0/150 cat food and litter for 2 cats
$0/60 medicine
Venmo: @bohe2389
Cashapp: $bohe2389 -
#1 in NFL Draft and #1 in Charity: Fernando Mendoza Just Pledged Half Million to Fight MS, Honoring Mom
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My Facebook memories this time of the year are filled with marathons. I can’t run much any more, but although #MS has taken a lot from me, it will never take these memories away.
(And, let’s be honest, marathons are bloody hard work).
If you’re running this weekend, best of luck and, whatever happens, remember to try and enjoy it. There’s a million people out there and they’re cheering just for you!
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https://www.europesays.com/videos/14163/ Thames Valley Police target dangerous drivers in new operation | ITV Meridian (Thames) #BenShephard #Berkshire #ChrisKamara #DangerousDriving #itv #ItvNews #ITVNewsInFull #LondonMarathon #MultipleSclerosis #ThamesValleyPolice
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Please boost: My spouse can no longer work due to #MultipleSclerosis and other complications; please help our queer family survive.
https://chuffed.org/project/kat
Our most urgent needs:
$125/172 for groceries
$0/150 cat food and litter for 2 cats
$0/60 medicine
Venmo: @bohe2389
Cashapp: $bohe2389 -
Please boost: My spouse can no longer work due to #MultipleSclerosis and other complications; please help our queer family survive.
https://chuffed.org/project/kat
Our most urgent needs:
$125/172 for groceries
$0/150 cat food and litter for 2 cats
$0/60 medicine
Venmo: @bohe2389
Cashapp: $bohe2389 -
Christina Applegate Breaks Silence Amid Hospitalization Reports to Give Health Update
#GeneralNews #ChristinaApplegate #MultipleSclerosis -
Thanks to @swisslet I saw this short video about fragments of daily lifes of MS diagnosed: https://m.youtube.com/watch?v=NJzyfR6dbT8
I live with #sclerosismultiplex for 8 years and started blogging about it in #polish about health care garden. Short story, after 5 years it progressed but now, after medicine change, I hope it slowed. In summer I'll check it with magnetic resonance.
#msawareness #multiplesclerosis #kesimpta -
It’s #MS Awareness Week.
If you aren’t aware, #MultipleSclerosis is a chronic, incurable condition. It’s progressive, can affect any part of the body and can be devastating.
Progression was initially slow for me, but it’s picking up speed and is now taking more and more away from me.
I do as much as I can and remain positive, but it’s a motherfucker.
Here’s a film made a few years ago that always makes me well up & is so beautifully made. Please enjoy.
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Please boost: My spouse can no longer work due to #MultipleSclerosis and other complications; please help our queer family survive.
https://chuffed.org/project/kat
Our most urgent needs:
$125/172 for groceries
$0/150 cat food and litter for 2 cats
$0/60 medicine
Venmo: @bohe2389
Cashapp: $bohe2389 -
People try their best, this is an aimless grumble.
See when well meaning Multiple Sclerosis groups email with a “We’d love your opinion on Y” and they give absolutely no reminders as to how you may have known about or signed up to Y in the first place. My goodness it’s a lot.
Thanks for the reminder that my memory is shot and the homework to validate who you are before I do the thing you wanted me to do.
Especially when they have vague, easy to forget names!
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Please boost: My spouse can no longer work due to #MultipleSclerosis and other complications; please help our queer family survive.
https://chuffed.org/project/kat
Our most urgent needs:
$125/172 for groceries
$0/150 cat food and litter for 2 cats
$0/60 medicine
Venmo: @bohe2389
Cashapp: $bohe2389 -
I had a terrible night with leg spasms last night. Very little sleep and just the awful inability to get comfortable, never mind to nod off. After pumping all night, they’re then so fatigued the next day too. Better today (I even managed some rowing this morning), but I now find myself dreading going to bed in case it happens again. It feels so arbitrary and all the gabapentin, baclofen, analgesics and medical cannabis in the world sometimes just won’t touch it.
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Please boost: My spouse can no longer work due to #MultipleSclerosis and other complications; please help our queer family survive.
https://chuffed.org/project/kat
Our most urgent needs:
$125/172 for groceries
$0/150 cat food and litter for 2 cats
$0/60 medicine
Venmo: @bohe2389
Cashapp: $bohe2389 -
CW: Burnout, mental and physical ill health
It's been six months now of declining health. I was chronically ill due to #multiplesclerosis before, but external circumstances have piled on and on and left me in a much worse state.
It started with the loss of half of my disability benefits forcing me to push past my limits to make money, then getting COVID, then having to push even further to do a trip to London to perform a show for only 4 people, and then my semi-estranged father died. Along the way I learned something very distressing related to a major trauma from my past, I had a sudden dramatic psychological change that might be an MS attack (still waiting on MRI results), and I got rejected for all the grants I'd applied for. Then I fell in love with someone who wasn't good for me and got my heart broken. I'm polyam and the only good thing in my life is that I still have an incredible partner who loves me and who came over to care for me for a few weeks, but now she's back in Canada and I don't know when I'll see her again.
I'm currently having to spend the vast majority of my time horizontal in bed, I hope just due to a temporary glitch in my pain meds. My sleep is severely disrupted due to pain and mental distress, both of which are made worse by lack of sleep. Despite this, I'm still making some progress on #burnoutrecovery by increasing my tolerance for thinking about creative projects again, spending more time reading, and taking steps to access talk therapy.
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Myelin-Reparatur: Metformin macht’s möglich? - DocCheck
Sind Nervenschäden bei Multipler Sklerose wirklich irreparabel? Neue Ansätze versprechen das Unmögliche: Die Neubildung von Myelin. Dabei könnten euch einige der vielversprechenden Wirkstoffkandidaten bekannt vorkommen.
https://www.doccheck.com/de/detail/articles/53149-myelin-reparatur-metformin-machts-moeglich #MS #MultipleSclerosis #neurology #MultipleSklerose #Neurologie #MyelinRepair -
https://www.europesays.com/ie/383729/ Gene mutation that aids high-altitude survival could repair myelin sheath damage #Brain #Cell #Éire #Evolution #Gene #Genes #Genetic #Health #hospital #IE #Ireland #medicine #MultipleSclerosis #Mutation #Myelin #Nerve #Neuron #Neuroscience #Oxygen #Paralysis #Research #Sclerosis #Technology #VitaminA
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How I remember International Women’s Day
As almost always happens, I forgot it was IWD until lunch time. So here’s a slightly update version of a post I did a few years ago. Enjoy!
Janes Plane live at the Ace, Brixton, 1982. Pictured, l to r, Nicola Griffith, Carol Holmes, Jane Lawrence.Once upon a time—44 years ago, on March 8, 1982 to be exact, International Women’s Day—I and four other women debuted our band, Janes Plane. (I’ve written about that many times so won’t rehash it here but do feel free to go down the search rabbit hole). It was early March, too, eleven years later, when Ammonite, my first novel, debuted in the UK. (Which makes today Ammonite’s 33rd birthday!) And of course it was just ten days after that that I was diagnosed with multiple sclerosis. For me, IWD is a complicated anniversary.
But today, just because it pleases me to do so, I’ll focus on the music. Here are two Janes Plane songs. The first, “Vondel Park,” is about the summer I was 19 and me and Carol, my lover (that’s what we said back then, lover, not partner or girlfriend) went to Amsterdam, got stranded with no money, starved in a campground for about a week, then finally got some cash and spent it immediately on, first, a Big Mac and fries, and, second, a chunk of red lebanese hash, which we smoked in Vondel Park in the sunshine while hippies played their guitars. I spent four lovely hours hallucinating herds of wild horses running with a 50′-tall Bertie Bassett (a figure made of Liquorice Allsorts—a liquorice sweet/candy). Here’s the song, accompanied by a video created from various TV clips of the band edited together by Lou, our bassist.
https://www.youtube.com/embed/-b3e8b-ERZ4?si=0ihs-DCgdzNVzGlX
And here’s “Bare Hands.” I don’t know what the song meant to the rest of the band, but my lyrics are about Hull, a grimy, desperate city in East Yorkshire (so bad you could address a letter to ‘Crap Town’ and it would get there), where I moved after I left Leeds in early summer, 1979 (right before we went to Amsterdam). I lived there with Carol for ten years and always knew it could be a better place, if only people would believe enough to try. I left long before that happened—but it did. So, to me, this is a song about hope.
I think IWD, too, is all about hope. So turn up the sound and drift and dream…
#ammonite #amsterdam #internationalWomenSDay #janesPlane #lesbianMusic #multipleSclerosis #music #singing #video #VondelPark #womensMusic -
How I remember International Women’s Day
As almost always happens, I forgot it was IWD until lunch time. So here’s a slightly update version of a post I did a few years ago. Enjoy!
Janes Plane live at the Ace, Brixton, 1982. Pictured, l to r, Nicola Griffith, Carol Holmes, Jane Lawrence.Once upon a time—44 years ago, on March 8, 1982 to be exact, International Women’s Day—I and four other women debuted our band, Janes Plane. (I’ve written about that many times so won’t rehash it here but do feel free to go down the search rabbit hole). It was early March, too, eleven years later, when Ammonite, my first novel, debuted in the UK. (Which makes today Ammonite’s 33rd birthday!) And of course it was just ten days after that that I was diagnosed with multiple sclerosis. For me, IWD is a complicated anniversary.
But today, just because it pleases me to do so, I’ll focus on the music. Here are two Janes Plane songs. The first, “Vondel Park,” is about the summer I was 19 and me and Carol, my lover (that’s what we said back then, lover, not partner or girlfriend) went to Amsterdam, got stranded with no money, starved in a campground for about a week, then finally got some cash and spent it immediately on, first, a Big Mac and fries, and, second, a chunk of red lebanese hash, which we smoked in Vondel Park in the sunshine while hippies played their guitars. I spent four lovely hours hallucinating herds of wild horses running with a 50′-tall Bertie Bassett (a figure made of Liquorice Allsorts—a liquorice sweet/candy). Here’s the song, accompanied by a video created from various TV clips of the band edited together by Lou, our bassist.
https://www.youtube.com/embed/-b3e8b-ERZ4?si=0ihs-DCgdzNVzGlX
And here’s “Bare Hands.” I don’t know what the song meant to the rest of the band, but my lyrics are about Hull, a grimy, desperate city in East Yorkshire (so bad you could address a letter to ‘Crap Town’ and it would get there), where I moved after I left Leeds in early summer, 1979 (right before we went to Amsterdam). I lived there with Carol for ten years and always knew it could be a better place, if only people would believe enough to try. I left long before that happened—but it did. So, to me, this is a song about hope.
I think IWD, too, is all about hope. So turn up the sound and drift and dream…
#ammonite #amsterdam #internationalWomenSDay #janesPlane #lesbianMusic #multipleSclerosis #music #singing #video #VondelPark #womensMusic -
How I remember International Women’s Day
As almost always happens, I forgot it was IWD until lunch time. So here’s a slightly update version of a post I did a few years ago. Enjoy!
Janes Plane live at the Ace, Brixton, 1982. Pictured, l to r, Nicola Griffith, Carol Holmes, Jane Lawrence.Once upon a time—44 years ago, on March 8, 1982 to be exact, International Women’s Day—I and four other women debuted our band, Janes Plane. (I’ve written about that many times so won’t rehash it here but do feel free to go down the search rabbit hole). It was early March, too, eleven years later, when Ammonite, my first novel, debuted in the UK. (Which makes today Ammonite’s 33rd birthday!) And of course it was just ten days after that that I was diagnosed with multiple sclerosis. For me, IWD is a complicated anniversary.
But today, just because it pleases me to do so, I’ll focus on the music. Here are two Janes Plane songs. The first, “Vondel Park,” is about the summer I was 19 and me and Carol, my lover (that’s what we said back then, lover, not partner or girlfriend) went to Amsterdam, got stranded with no money, starved in a campground for about a week, then finally got some cash and spent it immediately on, first, a Big Mac and fries, and, second, a chunk of red lebanese hash, which we smoked in Vondel Park in the sunshine while hippies played their guitars. I spent four lovely hours hallucinating herds of wild horses running with a 50′-tall Bertie Bassett (a figure made of Liquorice Allsorts—a liquorice sweet/candy). Here’s the song, accompanied by a video created from various TV clips of the band edited together by Lou, our bassist.
https://www.youtube.com/embed/-b3e8b-ERZ4?si=0ihs-DCgdzNVzGlX
And here’s “Bare Hands.” I don’t know what the song meant to the rest of the band, but my lyrics are about Hull, a grimy, desperate city in East Yorkshire (so bad you could address a letter to ‘Crap Town’ and it would get there), where I moved after I left Leeds in early summer, 1979 (right before we went to Amsterdam). I lived there with Carol for ten years and always knew it could be a better place, if only people would believe enough to try. I left long before that happened—but it did. So, to me, this is a song about hope.
I think IWD, too, is all about hope. So turn up the sound and drift and dream…
#ammonite #amsterdam #internationalWomenSDay #interview #janesPlane #lesbianMusic #multipleSclerosis #music #reviews #rock #singing #video #VondelPark #womensMusic #writing -
Christina Applegate on how MS made her an ‘honesty missile’: ‘I won’t lie and say any of this is a blessing’ https://www.theguardian.com/books/2026/mar/01/christina-applegate-ms-diagnosis-memoir-autobiography #AutobiographyAndMemoir #MultipleSclerosis #Society #Film #Culture #Books #Friends
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New maps of mouse brains reveal patterns of myelin formation
Johns Hopkins scientists say they have used 3D imaging, special microscopes and artificial intelligence (AI) programs to construct…
#NewsBeep #News #Science #3DImaging #Alzheimer'sDisease #Artificialintelligence #AU #Australia #Brain #Cell #Imaging #medicine #multiplesclerosis #Myelin #Nerve #Neurons #Neuroscience #pH #Sclerosis
https://www.newsbeep.com/au/497560/ -
New maps of mouse brains reveal patterns of myelin formation
Johns Hopkins scientists say they have used 3D imaging, special microscopes and artificial intelligence (AI) programs to construct…
#NewsBeep #News #Science #3DImaging #Alzheimer'sDisease #Artificialintelligence #AU #Australia #Brain #Cell #Imaging #medicine #multiplesclerosis #Myelin #Nerve #Neurons #Neuroscience #pH #Sclerosis
https://www.newsbeep.com/au/497560/ -
https://www.europesays.com/ie/350366/ New maps of mouse brains reveal patterns of myelin formation #3DImaging #Alzheimer'sDisease #ArtificialIntelligence #Brain #Cell #Éire #IE #imaging #Ireland #medicine #MultipleSclerosis #Myelin #Nerve #Neurons #Neuroscience #pH #Science #Sclerosis
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Two new subtypes of MS found in ‘exciting’ breakthrough https://www.theguardian.com/society/2025/dec/30/two-new-subtypes-of-ms-found-in-exciting-breakthrough #MultipleSclerosis #Science #Health #UclUniversityCollegeLondon