Devic's Disease

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Mary Canning
 • 
Neuromyelitis Optica
Pinned •

How One Mom with NMOSD Learned the Value of Putting Her Health First

Life Before My Diagnosis  As a 72-year-old grandmother of five (plus one incredibly cute great-grandson), family is everything to me. I’ve always enjoyed taking care of the people I love, whether that means baking and cooking for them, offering to babysit or hosting holiday gatherings. I’ve spent most of my life taking care of other [...]
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BeautifulPain
 • 
·
@beautifulpain
MightyTogether 2mo

I'm new here!

Hi, my name is BeautifulPain. I'm here because I have Neuromyeltis Optica (NMOSD) Family of Multiple Sclerosis & MOG, I was misdiagnosed so many times and for a long time with Fibromyalgia, for almost 8+/- years my Neurologist said, I have lesions behind my left eye on my brain, neck and spinal cord, It's a rare Disease its affects your whole nervous system & I am in Chronic Pain everyday (It drives me insane) affects my sight and my mobility, I have brain fogg & fatigue every day, I have flare ups and bad days and relapses that cause then new lesions but I cope I have to, I still work as a Hairstylist full time, and I have a 2 year old and a wife, would be great if we can create more awareness for Neuromyeltis Optica, I receive IV treatments and my chronic medication, anyone out there with Neuromyelitis Optica?

#MightyTogether #MultipleSclerosis #createawareness #NeuromyelitisOptica #painwarrior #RareDisease #ChronicFatigue #BrainFog

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BeautifulPain
 • 
·
@beautifulpain
MightyTogether 2mo

I'm new here!

Hi, my name is BeautifulPain. I'm here because I have Neuromyeltis Optica (NMOSD) Family of Multiple Sclerosis & MOG, I was misdiagnosed so many times and for a long time with Fibromyalgia, for almost 8+/- years my Neurologist said, I have lesions behind my left eye on my brain, neck and spinal cord, It's a rare Disease its affects your whole nervous system & I am in Chronic Pain everyday (It drives me insane) affects my sight and my mobility, I have brain fogg & fatigue every day, I have flare ups and bad days and relapses that cause then new lesions but I cope I have to, I still work as a Hairstylist full time, and I have a 2 year old and a wife, would be great if we can create more awareness for Neuromyeltis Optica, I receive IV treatments and my chronic medication, anyone out there with Neuromyelitis Optica?

#MightyTogether #MultipleSclerosis #createawareness #NeuromyelitisOptica #painwarrior #RareDisease #ChronicFatigue #BrainFog

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Mighty Partners
 • 
Devic's Disease (neuromyelitis optica)

Challenging the Status Quo of Neuromyelitis Optica Spectrum Disorder Care

Twenty years ago, receiving a diagnosis of neuromyelitis optica spectrum disorder (NMOSD) or Devic’s disease was even rarer than it is today. This unpredictable autoimmune disease is still not well known and often misdiagnosed as multiple sclerosis (MS), because it also causes inflammation of the central nervous system, resulting in symptoms like pain, vision loss, [...]
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Two young women sitting and talking outside
Two young women sitting and talking outside
Savannah Wall
 • 
Neuromyelitis Optica (Devic's)
1y

Why It's Healthy to Talk About How NMOSD Has Affected Your Life

We’ve all heard the saying, “You don’t have to look sick to be sick.” Such is the case with most patients living with neuromyelitis optica spectrum disorder (NMOSD), a rare neurological disease that affects your optic nerves, spinal cord, and sometimes the brain. It’s also sometimes called Devic’s disease. Symptoms can include blindness and paralysis. [...]
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Mary Canning
 • 
Neuromyelitis Optica

How One Mom with NMOSD Learned the Value of Putting Her Health First

Life Before My Diagnosis  As a 72-year-old grandmother of five (plus one incredibly cute great-grandson), family is everything to me. I’ve always enjoyed taking care of the people I love, whether that means baking and cooking for them, offering to babysit or hosting holiday gatherings. I’ve spent most of my life taking care of other [...]
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AL
 • 
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@aesthetics
FunctionalNeurologicalDisorder 1y
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State of Unbelief… #FND ? #nowayihavethat !

Hi! 😃💜💜
I’m new to the group!

Hope all of you are having a good day today! 😊💟

As the title states… I did NOT believe it when I received the #FNDdiagnosis !

I’m still having trouble grasping my neuros assessment of all my conditions & symptoms!….

Since I’ve been dealing with ALL my NEURO health issues since 2013 & she just met me last year!

— Can’t stand narrow minded tunnel vision non proactive & non helpful doctors! — #timetochangeneuros
#sotiredofthiscrap

Anybody else try to “forget” all their diagnosis ON THE DAILY??!!
— because it’s just too overwhelming & creates anxiety?

Anyway…
I try most days to push myself beyond the EXTREME pain & numerous symptoms & focus on ANYTHING ELSE to take my mind off my daily struggles & I’m sure you ALL do some of the same things!

— That’s it! lol 😜😎🥰

I hope each of you find JOY in your lives DAILY!😁😘

#timetorest
#HEDS #POTS #IIH #RheumatoidArthritis #DevicsDisease #wheelchairbound4x #OpticNeuritis #DoubleVision
#triplevision
#PCOS
#temporalpallorandscotomas
#GERD
#gastreoparesisSUCKS !! #PituitaryTumor #Diabetes #HBP #Asthma #COPD
#Anxiety #Depression #NeurogenicBladder #chronicUTIS #KidneyStones #toomanypillstotake !
#toomanydiagnosis !
#FOCUSONLIVINGLIFE !

GOD BLESS AND HELP US ALL!!💜❤️💗😇

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Mighty Partners
 • 
Neuromyelitis Optica

A Patient-Centered Approach to Managing NMOSD

Life with a chronic health condition can feel overwhelming and lonely, especially when it’s a rare disease that often goes misdiagnosed. This is the reality for the estimated 10,000-15,000 people in the U.S. who live with neuromyelitis optica spectrum disorder (NMOSD), sometimes referred to as Devic’s disease. NMOSD is an unpredictable autoimmune disease driven by [...]
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Laughing family sharing meal at picnic table in backyard
Laughing family sharing meal at picnic table in backyard
Ave Allmond
 • 
Devic's Disease (neuromyelitis optica)
1y

Why Relationships Matter With NMOSD

Upon leaving the hospital after being diagnosed with neuromyelitis optica spectrum disorder (NMOSD), I was given instructions on how and when to take medication, how to understand limitations, what to do if I fall, how to call for help, and a bunch of other information I’ve since forgotten. NMOSD is a rare autoimmune disease that [...]
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Trying to become a superwoman while battling a rare disase.
Trying to become a superwoman while battling a rare disase.
Savannah Wall
 • 
Devic's Disease (neuromyelitis optica)
2y

Trying To Be Superwoman While Battling a Rare Disease

Devic’s disease, also known as neuromyelitis optica spectrum disorder (NMOSD), is a neurological disease of the brain and spinal cord that causes inflammation of the optic nerve (optic neuritis) and inflammation of the spinal cord (myelitis). It’s often mistaken for multiple sclerosis (MS) because both diseases have similar symptoms.  I have a relapsing form of [...]
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