#spms — Public Fediverse posts

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

New from R&D: What If Penrose Is Asking The Wrong Question? https://artoffaceless.org/what-if-penrose-is-asking-the-wrong-question/?utm_source=dlvr.it&utm_medium=mastodon #Gödel #Penrose #ThrottledMachines #Research #SPMS

New from R&D: What If Penrose Is Asking The Wrong Question? https://artoffaceless.org/what-if-penrose-is-asking-the-wrong-question/?utm_source=dlvr.it&utm_medium=mastodon #Gödel #Penrose #ThrottledMachines #Research #SPMS

Hoje enviei um email aos Serviços Partilhados do Ministério da Saúde a pedir a ligação para eu poder descarregar a versão Linux do Plugin SLA que permite aceder com o Cartão de Cidadão ou da Ordem dos Médicos à aplicação Prescrição Eletrónica Médica. A resposta: "Esse plugin não foi testado em Linux pelo que deverá instalar um sistema operativo compatível."

Não se trata de falar mal ou, sequer, falar por falar, mas fico triste pelo nosso país...

#SPMS #saude

Hoje enviei um email aos Serviços Partilhados do Ministério da Saúde a pedir a ligação para eu poder descarregar a versão Linux do Plugin SLA que permite aceder com o Cartão de Cidadão ou da Ordem dos Médicos à aplicação Prescrição Eletrónica Médica. A resposta: "Esse plugin não foi testado em Linux pelo que deverá instalar um sistema operativo compatível."

Não se trata de falar mal ou, sequer, falar por falar, mas fico triste pelo nosso país...

#SPMS #saude

#TeriGarr died today, of "complications of multiple sclerosis." Our lifespans are shorter I know, but a hard way to be reminded #SPMS #multiplesclerosis

#PIRA is me, apparently! Just thought I'd bounced to #SPMS, but maybe not? #disability #MS https://multiplesclerosisnewstoday.com/news-posts/2023/10/06/ms-progression-without-relapses-drives-most-disability-worsening/?utm_source=MS&utm_campaign=c1f14b44be-RSS_EMAIL_CAMPAIGN_US_%2A%7CDATE%7C%2A&utm_medium=email&utm_term=0_b5fb7a3dae-c1f14b44be-74949233

#PIRA is me, apparently! Just thought I'd bounced to #SPMS, but maybe not? #disability #MS https://multiplesclerosisnewstoday.com/news-posts/2023/10/06/ms-progression-without-relapses-drives-most-disability-worsening/?utm_source=MS&utm_campaign=c1f14b44be-RSS_EMAIL_CAMPAIGN_US_%2A%7CDATE%7C%2A&utm_medium=email&utm_term=0_b5fb7a3dae-c1f14b44be-74949233

So much of this describes my life at 61 with #SPMS. The taxi thing especially.
NYTimes: What They Don’t Tell You About Getting Old
What They Don’t Tell You About Getting Old https://www.nytimes.com/2023/09/30/opinion/aging-old-wisdom.html?smid=nytcore-android-share

So much of this describes my life at 61 with #SPMS. The taxi thing especially.
NYTimes: What They Don’t Tell You About Getting Old
What They Don’t Tell You About Getting Old https://www.nytimes.com/2023/09/30/opinion/aging-old-wisdom.html?smid=nytcore-android-share

#Disability mastfolk: This week began with a visit to the physiatrist to plan a rehab strategy. But learned for the first time that my #SPMS diagnosis included the words "incomplete paralysis."

My life is a bad poem.

#Disability mastfolk: This week began with a visit to the physiatrist to plan a rehab strategy. But learned for the first time that my #SPMS diagnosis included the words "incomplete paralysis."

My life is a bad poem.

@tomkindlon just adding more hashtags to your (great) thread because these are concerns which effect the entire spectrum of disabled/chronic/invisible illness communities

#MultipleSclerosis #RRMS #PPMS #SPMS #DemyelinatingDisease
#LymeDisease #Fibromyalgia #PsoriaticArthritis #RheumatoidArthritis #SleepDisorders #SleepApnea #Narcolepsy #Parasomnia #CircadianRhythmDisorders #non24 #ShiftWorkDisorder #IdiopathicHypersomnia

@tomkindlon just adding more hashtags to your (great) thread because these are concerns which effect the entire spectrum of disabled/chronic/invisible illness communities

#MultipleSclerosis #RRMS #PPMS #SPMS #DemyelinatingDisease
#LymeDisease #Fibromyalgia #PsoriaticArthritis #RheumatoidArthritis #SleepDisorders #SleepApnea #Narcolepsy #Parasomnia #CircadianRhythmDisorders #non24 #ShiftWorkDisorder #IdiopathicHypersomnia

@NetteGoose #MSdx 2003, #opticneuritis, and #dropfoot. "Retired" 2010. #SPMS, long slow downhill side, now in a #wheelchair. Been thru all the meds, now only #cellcept and #intrathecalbaclofen.

#MSdx 2003, #opticneuritis, and #dropfoot. "Retired" 2010. #SPMS, long slow downhill side, now in a #wheelchair. Been thru all the meds, now only #cellcept and #intrathecalbaclofen.

#MS #Rituximab #Ocrelizumab #antiCD20 #SPMS #Neurologie #Neuroimmunologie

Ich habe mal eine Frage an die neurologischen Kollegen hier in der Runde:

Problem bei Einsatz von Ocrelizumab im Rahmen einer sekundär progredienten MS (SPMS) ist, dass eine klinisch und radiologisch nicht-aktive SPMS eine „off label“-Indikation wäre, in den Leitlinie der Einsatz aber in Analogie zur primär progredienten MS (PPMS) im Einzelfall in Betracht gezogen werden kann, jeden ausdrücklich ohne jede Evidenz.

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#MS #Rituximab #Ocrelizumab #antiCD20 #SPMS #Neurologie #Neuroimmunologie

Ich habe mal eine Frage an die neurologischen Kollegen hier in der Runde:

Problem bei Einsatz von Ocrelizumab im Rahmen einer sekundär progredienten MS (SPMS) ist, dass eine klinisch und radiologisch nicht-aktive SPMS eine „off label“-Indikation wäre, in den Leitlinie der Einsatz aber in Analogie zur primär progredienten MS (PPMS) im Einzelfall in Betracht gezogen werden kann, jeden ausdrücklich ohne jede Evidenz.

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@Griffax hello, there is #mschat if you want to talk about #SPMS otherwise there are many other interesting and smart people to share your interests with. Use # and keywords. Wish you a nice day ☀️🌞

Hello #PWMS, #Researchers #FediScience #Neuros

UPDATE UPDATE UPDATE

I’ve seen several hashtags using variations of #MultipleSclerosis, #MS, #RRMS, #SPMS, #LifeWithMS, #PPMS #MSRunner. Etc.

Can we use

👉🏼 #MultipleSclerosis 👈🏼 AND #MSChat

for #MS related stuff

AND STILL use a subtopic hashtag to introduce folks to the wide variety of topics and interests.

I hoping we get some #researchers, #scientists, and #neuros in the loop.

Thank for boosting.

❤️Anne

Hello #PWMS.

UPDATE UPDATE UPDATE

I’ve seen several hashtags using variations of #MultipleSclerosis, #MS, #RRMS, #SPMS, #LifeWithMS, #PPMS #MSRunner. Etc.

Can we use

👉🏼 #MultipleSclerosis 👈🏼 AND #MSChat

for #MS related stuff

AND STILL use a subtopic hashtag to introduce folks to the wide variety of topics and interests.

I hoping we get some #researchers, #scientists, and #neuros in the loop.

Thank for for your suggestions, past boosts of my posts and following me.

❤️Anne

Hello #PWMS

I’ve seen several hashtags using variations of #MultipleSclerosis, #MS, #RRMS, #SPMS, #LifeWithMS, #PPMS #MSRunner. Etc.

Can we try consolidating under #MultipleSclerosis AND #MSChat For all things #MultipleSclerosis related

AND still use a subtopic hashtag to introduce folks to the wide variety?

I hoping we get some of the post bird #researchers, #scientists, and #neuros in the loop.

Thank for for your past boosts of my posts and following me.

❤️Anne

@Adlai

No worries.

You can always use #MSChat plus more specialized hashtags so folks can find your post in the larger #MSCommunity and in the subtopic group that interests you.

I’ve had #MS since 1984 and am just recently getting into creating #MSArt.

The picture is a card I made for my #Neuro for “target practice” on where the LP goes. 🤣

I’ve had 3 LPs this year as part of the #ATA188 trial for nonactive #SPMS.

Thank you for your insight!

#MultipleSclerosis

❤️Anne

Hello!

I’ve seen several hashtags using variations of #MultipleSclerosis, #MS, #RRMS, #SPMS, #LifeWithMS, #MSRunner. Etc.

Can we try consolidating under #MSChat For all things #MultipleSclerosis related.

I hoping we get some of the post bird #researchers, #scientists, and #neuros in the loop.

Thank for for your past boosts of my posts and following me.

❤️Anne

Hello!

I’ve seen several hashtags using variations of #MultipleSclerosis, #MS, #RRMS, #SPMS, #LifeWithMS, #MSRunner. Etc.

Can we try consolidating under #MSChat For all things #MultipleSclerosis related.

I hoping we get some of the post bird #researchers, #scientists, and #neuros in the loop.

Thank for for your past boosts of my posts and following me.

❤️Anne

Hello!

Thank you much for looking in.

I am particularly interested in #ArmChairTravelling and #StreetPhotography due to my #Disability with #MultipleSclerosis and my participation in the drug trial for #ATA188 #EBV #TCells and #Neurology. #ATARABIO.

Please boost the #MultipleSclerosis hashtag so we can come together as PwMS, medical personnel and researchers to share info and expertise.

You are welcome to check my #ATAUpdates on my #SPMS progress and my #StreetPhotography on my profile page.

@KrazyDiamond Thank you for reaching out! Yes I have #MS (#SPMS). I’m doing well considering everything. Looking for the #MultipleSclerosis #neurology researchers I followed on the bird. Glad to follow you and your journey.

Heat and #ColdSensitivity in #MultipleSclerosis:A patient-centred perspective on triggers, symptoms, and thermal resilience practices https://www.sciencedirect.com/science/article/pii/S2211034822005831

#MS #SPMS #MSChat. (New hashtag to consolidate info).

Let’s connect! #FollowMe