#multiple-sclerosis — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #multiple-sclerosis, aggregated by home.social.
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New #MultipleSclerosis treatment approach: Funding of EUR 1.1 mio. from ForTra gGmbH for #ResearchTransfer, a subsidiary of the Else Kröner-Fresenius Foundation, enables further development of a drug patch developed at #MainzUniversity to stimulate the regeneration of damaged myelin sheaths
https://nachrichten.idw-online.de/2026/09/01/multiple-sclerosis-treatment-approach-developed-at-mainz-university-moves-toward-clinical-application -
#MultipleSclerosis treatment approach developed at #MainzUniversity moves toward clinical application: Funding of EUR 1.1 mio. from ForTra gGmbH for #ResearchTransfer, a subsidiary of the Else Kröner-Fresenius Foundation, enables further development of a drug patch designed to stimulate the regeneration of damaged myelin sheaths 👉 https://press.uni-mainz.de/multiple-sclerosis-treatment-approach-developed-at-mainz-university-moves-toward-clinical-application/
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I've got an MS flair up right now. Basically damage in my brain is confusing my hands and making them cramp. I can manually adjust my thumb with my other hand to end the cramp but as soon as I let go, it cramps again. Same with my middle back muscles.
#multiplesclerosis -
So my new meds that keep my brain from eating itself can cause liver failure.
#multiplesclerosis -
Let's see if I will be accepted to join to study https://clinicaltrials.gov/study/NCT07779460
#multiplesclerosis #clinicaltrial #kesimpta -
Learned the other day that an old colleague of mine, diagnosed with #MultipleSclerosis around the same time as me and for many years considered “benign” (ie not progressing), is now using a wheelchair. She’s as positive as always and has just been on holiday in china, but it was still a bit of a shock. My mobility is declining fast, but I need to remind myself that I’m racing in an eight on Saturday at Oxford #rowing and these things are relative.
I can’t really run any more, as Saturday’s parkrun reminded me for at least three days afterwards, but I am still doing as much as I can.
Shitty disease.
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‘I longed to play the Bach violin double with my daughter – but then I got MS’
By Shakira HusseinWhen multiple sclerosis began to affect her fine motor skills, Shakira Hussein found a way to redesign her dream, rather than give it up altogether
#Multiplesclerosis #Family #Music #Health #TheGuardian #ShakiraHussein
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That was parkrun #314 and volunteer credit #284 (I took some photos). I shouldn’t think I’ll make 500 runs (I now can’t actually get on my bike on my weaker side now and running is a slog of dragging my body around using mainly willpower), but I will get there with volunteer credits.
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The wife was racing at Stourport in an 8 today, so I took advantage of her absence to earn my Lake Legend badge: cycle, run, swim, sauna.
Cycle over the new bridge over the Trent and straight into the park, parkrun, swim, sauna. Lovely. The running is the hard bit now, but I staggered round with my leg brace in a shade under 35 minutes.
Anything for a badge, eh?
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The End of Tom Six review – Human Centipede director delivers one last freaky flick
By Peter BradshawNow living with multiple sclerosis, Six rants about the masturbation film distributors won’t touch and the money mystery behind his horror hit
https://www.theguardian.com/film/2026/aug/13/the-end-of-tom-six-review-human-centipede-director
#Film #Documentaryfilms #TheHumanCentipede3FinalSequence #Multiplesclerosis #Culture #Horrorfilms #Society #TheGuardian #PeterBradshaw
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If something is hard, that is a sign it is worth doing👍
Or that it is not worth even considering👎
It depends.Asking a Lot, Trusting a Little: The Nutrition Doc and the Informed Patient
https://butterbei.de/en/posts/asking-a-lot-trusting-a-little-informed-patient/
#nutrition #food #Ketosis #Keto #MS #multiplesclerosis -
German nutrition doc Riedl earns both praise and criticism for a single podcast episode: Giving up wheat even without coeliac disease👍; Double standards on nutrition studies👎.
Eating with Two Yardsticks: The Nutrition Doc's Burden of Proof
https://butterbei.de/en/posts/eating-with-two-yardsticks-burden-of-proof-nutrition-doc/
#nutrition #food #Ketosis #Keto #ms #multiplesclerosis #edocs #science -
Human Centipede director Tom Six reveals multiple sclerosis diagnosis in ‘final film’
By Philip Oltermann European culture editorThe Dutch creator of the controversial trilogy set to detail struggles with neurological disease in homemade documentary, after spending six years ‘as a recluse’
#Film #Culture #Documentaryfilms #Multiplesclerosis #TheGuardian #PhilipOltermannEuropeancultureeditor
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And here’s some pictures of my now concluded running career.
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Reluctantly concluding that I can’t really run anymore. The physical strain on my body is just too much as the #MS related weakness means I’m basically dragging one half of my body around rather than really running. Perhaps this should have been obvious years ago and I’m just unusually stubborn, but here it is and I’m having to adjust to losing something that’s been a huge part of my life.
Oh well. Onward. I took up rowing a few years back as this day was always likely to come. My legs are getting significantly worse at the moment, as is my balance, but I’ll try to take whatever comes in my stride and keep buggering on.
Honestly, what other choice is there?
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Welp. Here’s to day one of hormone replacement therapy. May I never have a week like last week again. #MS #perimenopause #multipleSclerosis
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Blood work completed today and a prescription coming in a few days. Looks like my medical team is listening! I love it. #MS #multipleSclerosis
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CW: Burnout recovery, positive
A lot to celebrate at the moment.
- I've been out of bed for most of the day for a good few weeks
- I've been writing, singing, cooking, fermenting
- My last two crashes were short and self-limiting, rather than kicking off a vicious cycle of overexertion
- I still can't imagine much of a future for myself, but I feel like I'm in touch with the inner resources that will get me to whatever comes nextHonestly, Week of Patching and Old Computer Challenge both did me a huge amount of good. It meant a lot to have a space where I can tinker with purpose, without demand.
The last few days have been really great thanks to the wheelchair, though I had to stay in on Sunday due to a crash (of the bodymind, not the chair!). Compression socks, electrolytes, and dietary changes have also been important in managing the cardiovascular stuff, and I think I'm benefitting from an increase in my medical cannabis dose. Tomorrow I have another attempt at getting my GP to prescribe beta blockers - I'm still really hoping this could turn things around decisively, but I do seem to be improving regardless.
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Good morning, dear fellow travellers through the twists and turns of (world) politics 🌹❤️☕. I wonder what Mr Smithers would say about such costs for an early retiree who’s unfit for work? And then something like this! 😇✊ (a German joke for the new Health Minister
#multiplesklerose #multiplesclerosis Guten Morgen liebe Mitreisende durch die verknorksten Windungen der (Welt-)Politik 🌹❤️☕. Was wohl Mr. Smithers zu solchen Kosten für einen arbeitsunfähigen Frührentner sagt? Und dann so etwas! 😇✊
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Ocrelizumab: Ein Funke Hoffnung bei schwerer #MS - DocCheck
Wer denkt, bei fortgeschrittener MS kann nichts mehr getan werden, täuscht sich. Denn auch vermeintlich ausweglosen Fällen könnte geholfen werden – mithilfe eines alten Bekannten.
https://www.doccheck.com/de/detail/articles/53749-ocrelizumab-ein-funke-hoffnung-bei-schwerer-ms #MultipleSklerose #MultipleSclerosis -
Middle stage of SM? Leg's muscles pain and lacking words aka brain fog. Oh, and quick being tired.
Dunno if "middle".
#multiplesclerosis #fuckms
