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_L“this is ms.” is on @youtube now 🎥
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@ms_trust #MSCommunity #MS #MultipleSclerosis #LivingWithMS #mswarrior #msfighter #chronicillness #msgang #disabledandproud #multiplesclerosisawareness #mstrust
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Reel di Tendenza
(12)
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FI“One year ago, my sister Gracie was completely healthy. Then, in March, everything changed. She fell ill, and it took three urgent care visits before they took us seriously that something was wrong. For two months, we watched her rapidly decline while doctors struggled to diagnose her. Nothing they tried was working.
After two long months, we finally had an answer: Marburg MS—a rare, aggressive form of multiple sclerosis that progresses rapidly and can be devastating. Only 1-3% of the MS population has this form, and many MS specialists will go their entire careers without ever seeing a single case. By the time she was diagnosed, Gracie had gone from walking with assistance to being completely immobile, from eating normally to requiring a feeding tube. They tried three or four treatments before getting her diagnosis, and it wasn’t until the fifth treatment that we started seeing some improvement—but by then, so much damage had already been done.
Our mom never left her side, living in the hospital with her for three months. My sisters and I took shifts to make sure she was never alone. We watched Gracie fade before our eyes, feeling helpless as we wished the doctors had caught it sooner, wished they had been equipped to do more.
But we are not giving up. Awareness needs to be brought to this horrible disease that doctors hardly know anything about. We will not give up on Gracie. We will continue to seek treatments that can help her. We have hope she will recover. It takes a community of voices to bring awareness—because no family should have to go through this fight alone.” Right now we are trying to raise enough funds for my sweet sister Gracie to get a wheelchair accessible van. Our GoFundMe is in our bio. Please share to help our cause and bring awareness to Marburg MS.
#multiplesclerosis #msawareness #marburgms #msfighter #mswarrior💪 #communitymatters #fightingforgraciems #chronicillnesslife #caregiver #family #disability #fighttogether #mscure
@fightingforgraciems
4.2K
LI🧠 What is MS… and what isn’t it? Multiple sclerosis is a neurological condition where the immune system attacks the myelin protecting your nerves — causing symptoms like fatigue, brain fog, numbness, dizziness, and vision issues. But here’s what MS isn’t: it isn’t laziness, it isn’t “all in your head,” it isn’t predictable, and it definitely isn’t the same for everyone. Today’s video breaks down the basics in a simple, no-nonsense way 💛
Follow @LiveWithMS for more MS education, symptom guides, and daily support. #MultipleSclerosis #MSAwareness #MSCommunity #MSWarrior #MSSymptoms #LivingWithMS #MSStrong #MSFatigue #MSHealth #MSJourney #MSFighter #ChronicIllnessMS #MSLife #MSCare #MSKnowledge
@live_withms
3.0K
MUSay something❤️
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📸 Source: @ enjoythejourneyidtoms on TikTok
All credit are reserved for their respective Owners
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💥Contact for credit/removal=> @ fixposts
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#chronicillness#chronicpain#invisibleillness#autoimmune#multiplesclerosis#tipoftheday#mswarrior#msawareness#inthistogether#msfighter#mssucks#curems#neuroplasticity#mswarrior💪#multiplesclerosismama#multiplesclerosisfighther#multiplesclerosisresearch
@multiplesclerosishero
338.6K
FI**Part Four: The Diagnosis**
After waiting to see if plasmapheresis would work and seeing no improvement we finally got a diagnosis: Marburg MS.
Marburg multiple sclerosis is a rare and extremely aggressive form of MS. Unlike typical MS, which progresses over years, Marburg MS moves at an alarming speed, causing severe neurological damage in a matter of weeks or months. It has a high mortality rate, and treatment options are limited.
The neurologist entered the room, and from the look on her face, we already knew it was bad. There was no optimism, no reassurance—just cold, hard reality. She told us that Marburg MS was one of the most aggressive forms of the disease and that the prognosis wasn’t good. The only option was to start chemotherapy immediately in an attempt to slow it down.
We all took to the internet, desperately searching for anything we could find about Marburg MS. Meanwhile, the neurologists at the hospital began holding regular meetings with specialists across the country. This disease was so rare that most doctors had never encountered it before. They didn’t know how to treat it. It took a panel of experts, working together, just to figure out the next steps.
Of course, chemotherapy came with risks—serious ones. But despite those risks, her life was on the line, and we were willing to do whatever it took to save her.
But they couldn’t start the chemotherapy right away. She kept getting infections, which added even more risk to the situation. The infections needed to clear before they could begin treatment, and every day they waited, her condition could worsen. So we waited—helpless, terrified, watching the clock as each day passed. Every moment felt like a gamble, and all we could do was hope that time wouldn’t run out.
🔔Pease follow for Part 5🔔
#MSFighter #MSWarrior #FightingForGracie #FundraisingForGracie #Disability #Love #Family #ChronicIllness #Multiplesclerosis #MarburgMS #FrankiesFightAgainstMS #CommunityMatters #CrowdFunding
@fightingforgraciems
9.0K
BEI was very upset for months after my diagnosis. It felt like I was on an emotional rollercoaster, trying to survive with no seatbelt.
I remember falling asleep crying, scared of how I was going to wake up the next day. What if my legs stopped working overnight? What if my face went numb again? Most nights, I couldn’t even fall asleep.
One thing I knew for sure: staying in that stage was making me even sicker.
It was making my current symptoms worse.
So I decided—it was time to focus on the positive. To surround myself with people who believe in healing. People who’ve done it.
@drterrywahls was the first person who gave me hope, and I learned so much from her story. Then I found @mathew.embry, @drsusanmonias, @drsusanpayrovi, and so many others—including the incredible people who shared their journeys in the @beatingmultiplesclerosis book.
Sometimes all we need is a little spark to remember the light exists. 💛 And there’s nothing wrong with believing in miracles or following the paths of others who’ve healed or healing...
Along the way, I learned what was making my symptoms worse—and being stuck in a pessimistic state was one of them.
Have you ever felt like your emotions were making things worse?
I’d love to know…
#mswarrior #multiplesclerosissociety #multiplesclrosis #mscommunity #mssupport #mscure #msfighter #thrivingwithms #livingwithms #beatingmyms
@beatingmyms
28.3K
MUMultiple Sclerosis impacts 23 million people but progress is being made!
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📸 Source: @ medicineunfiltered on TikTok
(Dm for credit or removal / All rights® are reserved & belong to their respective owners)
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#chronicillness#chronicpain#invisibleillness#autoimmune#multiplesclerosis#tipoftheday#mswarrior#msawareness#inthistogether#msfighter#mssucks#curems#neuroplasticity#mswarrior💪#multiplesclerosismama#multiplesclerosisfighther#multiplesclerosisresearch
@multiple_sclerosis_facts
16.8K
CHWhen you live with chronic illness, people often say things they think will help but instead, it teaches you to bury what you’re going through.
“Just get over it.”
“It can’t be that bad.”
“You don’t look sick.”
So I learned to hide my pain where no one could see it.
I smiled through the symptoms.
I downplayed the crashes.
I made it look easy, even when it was breaking me.
But here’s the truth hiding it doesn’t make it easier.
It just makes you feel more alone.
If you’ve ever been told to “get over it,” I hope you know you never have to pretend here. 🖤
💬 Comment 🖤 if you’ve ever felt unseen in your illness journey.
#chronicillness #multiplesclerosis #mswarrior #chronicillnesslife #invisibleillness #msfighter #fatiguerecovery #autoimmunedisease #mindbodyconnection #chronicillnesssupport
@chronicfitjourney
30.7K
ELРассеянный склероз - не приговор. Жизнь с Рассеянным склерозом продолжается, и каждый день — это победа.
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Տրված սկլերոզը դատավճիռ չէ: Ցրված սկլերոզի հետ կյանքը շարունակվում է և յուրաքանչյուր օր՝ հաղթանակ է:
#ms #thisisms #lifewithms #mswarrior #msfighter #strongerthanms #msstrong #mslife #multiplesclerosis #multiplesclerosiswarrior #msliving
#bestbetdiet #bbd
#РС #рассеянныйсклероз #рассеянныйсклерознеприговор #движениежизнь #сильнее_рс #диетаэмбри #окревус #жизньбезограничений
#ցրվածսկլերոզ #ցրված_սկլերոզ
#ապրիրլիարժեք
@elinapapyan
2.3K
LEЩо таке життя з розсіяним склерозом? Це коли навіть найпростіші дії відчуваються як важке тренування в залі і треба докладати чималих зусиль, що б просто зробити буденні справи. Але і воля до життя стає зовсім іншою. Дякую всім, хто поруч і хто вірить в мене. І дуже дякую всім, хто загубився.
#mssociety #msfighter #msfighter👊 #spoonies #spoonie #spoonielife #multiplesclerosisawareness #invisibleillnesses #invesibleilnesswarrior #spooniecommunity #mswarrior #multiplesclerosisfighter #multiplesclerosiswarrior #disabilityawarness #chronicillness #mswontstopme #chronicfatigue #sick #розсіянийсклероз #життязрс #боротьбазажиття
@lerabolshak
8.5K
MU“One year ago, my sister Gracie was completely healthy. Then, in March, everything changed. She fell ill, and it took three urgent care visits before they took us seriously that something was wrong. For two months, we watched her rapidly decline while doctors struggled to diagnose her. Nothing they tried was working.
After two long months, we finally had an answer: Marburg MS—a rare, aggressive form of multiple sclerosis that progresses rapidly and can be devastating. Only 1-3% of the MS population has this form, and many MS specialists will go their entire careers without ever seeing a single case. By the time she was diagnosed, Gracie had gone from walking with assistance to being completely immobile, from eating normally to requiring a feeding tube. They tried three or four treatments before getting her diagnosis, and it wasn’t until the fifth treatment that we started seeing some improvement—but by then, so much damage had already been done.
Our mom never left her side, living in the hospital with her for three months. My sisters and I took shifts to make sure she was never alone. We watched Gracie fade before our eyes, feeling helpless as we wished the doctors had caught it sooner, wished they had been equipped to do more.
But we are not giving up. Awareness needs to be brought to this horrible disease that doctors hardly know anything about. We will not give up on Gracie. We will continue to seek treatments that can help her. We have hope she will recover. It takes a community of voices to bring awareness—because no family should have to go through this fight alone.” Right now we are trying to raise enough funds for my sweet sister Gracie to get a wheelchair accessible van. Our GoFundMe is in our bio. Please share to help our cause and bring awareness to Marburg MS.
#multiplesclerosis #msawareness #marburgms #msfighter #mswarrior💪 #communitymatters #fightingforgraciems #chronicillnesslife #caregiver #family #disability #fighttogether #mscure
#Repost
///@fightingforgraciems
@multiplesclerosisstrong
2.4K
WAMultiple Sklerose – oft einfach MS genannt – ist eine chronische, nicht heilbare Erkrankung des zentralen Nervensystems, also von Gehirn und Rückenmark.
Bei MS greift das Immunsystem irrtümlich die schützende Hülle der Nervenfasern (Myelin) an. Diese Hülle funktioniert normalerweise wie eine Isolierung bei einem Kabel – sie sorgt dafür, dass Nervenreize schnell und korrekt weitergeleitet werden.
Wenn sie beschädigt wird, kommen Signale zwischen Gehirn und Körper durcheinander oder gar nicht mehr an.
⚡ Mögliche Symptome (sehr unterschiedlich bei jedem!)
MS kann ganz verschieden verlaufen – kein Fall ist gleich. Typische Symptome können sein:
Müdigkeit (Fatigue) – eine extreme Erschöpfung, die nicht wie „normale Müdigkeit“ ist
Sehstörungen (z. B. verschwommenes oder doppeltes Sehen)
Taubheitsgefühle oder Kribbeln in Armen, Beinen oder Gesicht
Gleichgewichtsprobleme oder Schwindel
Muskelschwäche oder Spastik
Kognitive Veränderungen – Konzentration, Denken, Wortfindung
Schmerzen
🔄 Verlauf
Es gibt verschiedene Verlaufsformen:
1. Schubförmig-remittierende MS (RRMS) – Schübe kommen und gehen, Symptome bessern sich teils oder ganz.
2. Sekundär progrediente MS (SPMS) – Die Krankheit schreitet nach Jahren schubförmiger Verläufe langsam fort.
3. Primär progrediente MS (PPMS) – Von Beginn an eine stetige Verschlechterung, meist ohne deutliche Schübe.
💚 Behandlung & Leben mit MS
MS ist nicht heilbar, aber gut behandelbar.
Moderne Therapien können das Fortschreiten verlangsamen, Schübe reduzieren und Symptome lindern.
Mit richtiger Behandlung, Bewegung, ausgewogener Ernährung und mentaler Stärke können viele Betroffene ein aktives, erfülltes Leben führen.
#MultipleSklerose #MSAwareness #MSWarrior #MSKämpferin #LebenMitMS #MSFighter #UnsichtbareKrankheit #MSCommunity #ChronicIllnessWarrior #Autoimmunerkrankung #MSJourney #MSStärke #MSFamilie #MSAwarenessMonth #ChronischAberStark #Hoffnung #Mut #MSLeben #FightMS #MSGedanken #MSDeutschland #InvisibleIllness #TogetherWeFightMS#fyp
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