Steve RoyFeb 13
Tonight thanks to my local MS support group I learned about progression independent of relapse activity, or PIRA. I'm blown away by how much this speaks to my experience with MS since last year. From the way my neurologist said my symptoms were atypical, to my last MRI showing no new brain lesions, even though I haven't been feeling 100%. The idea that demyelination is a by-product of the neurodegeneration caused by PIRA is very interesting. I'm so grateful for my support group right now. ❤️
#RRMS #MultipleSclerosis
https://www.nationalmssociety.org/news-and-magazine/momentum-magazine/research-and-science/understanding-pira-in-ms
GirlCrooshDec 13, 2023
It is almost funny how I thought I was not going to be anxious about my #rituxan infusion today. I almost made it to go time without an #anxiety spike, but the IV steroids put an end to that dream. #MultipleSclerosis #MSSucks #pwms #rrms #ChronicIllness #AnxietyDisorder #infusion #rituximab
GirlCrooshMay 2, 2023
I can go long periods without my #multiplesclerosis really impacting me, but today it’s rearing its ugly head. Manifesting in some vertigo and tingling in my hands and feet. I’d forgotten how much high anxiety levels can trigger MS. The past week has been ridiculous and my #anxietydisorder is definitely a factor in how I feel today. Luckily I can take the majority of the day off work to recoup. #chronicillness #fums #pwms #rrms
GirlCrooshApr 21, 2023
I’m so fucking angry. For the first time since diagnosis I have new lesions. Nearly eight years with nothing new on my #MRI and suddenly multiple new lesions. I’ve had a day to sit with it so I no longer feel like I’ve been punched in the gut. But even still. I’m so disappointed. I’d almost tricked myself into believing it was going away. Fuck you, MS. #fums #rrms #ms #multiplesclerosis #pwms #chronicillness #brainlesions
Motel California Jan 19, 2023
I like to play a little game with myself after getting out of the shower called “did I seriously only shave one leg?” as I discover which area of my body I completely missed. #shorttermmemoryloss is wild #multiplesclerosis #rrms #invisibleillness #disabilaty
Show threadTamaraSellmanDec 3, 2022

@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

Show threadLomelindi12Dec 2, 2022

@zenhead @NetteGoose

Hi!

Always up for#MS talk. I have #RRMS & was DX’d in 2009. I had Lemtrada in ‘2018/19 & am doing pretty well (given the givens). I was a volunteer on a national MS telephone Helpline for several years, which taught me a *lot*

How about you guys?

Caitlin mka KatieDec 1, 2022

@sburall
migraines... f**k**g b***s**t

could be a presyptom for an MS-Attack (my experienc since 10y after 1st Diagnosis)
if ye'r gut tell ye s.thing is wrong... go to hospital w/out Doc's consent and they should check ye with a contrast magnetic resonance imaging and pump ye cortison in yr veins..
*period*
only w/ this ye can stop the progress on #RRMS

tomorrow morning ye call ☎️⬇️to recommend ye a propper Neurologist who knows about #multipleSclerosis

https://mstrust.org.uk/?utm_medium=ppc&utm_source=adwords&utm_campaign=SS+%7C+Search+%7C+Multiple+Sclerosis&utm_term=multiple%20sclerosis&hsa_acc=6635963470&hsa_src=g&hsa_grp=3052377317&hsa_kw=multiple%20sclerosis&hsa_ver=3&hsa_tgt=kwd-15607912&hsa_mt=p&hsa_ad=532174523409&hsa_net=adwords&hsa_cam=82218077&gclid=Cj0KCQiAvqGcBhCJARIsAFQ5ke4Qj67WOjm1wXlJwyhjTGi4QYYluv2A4_A9IdZabU1bw__nxFtZGxEaAnbxEALw_wcB

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MS Trust
Silver GorillaNov 18, 2022

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

Silver GorillaNov 17, 2022

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