Devic's Disease

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Devic's Disease
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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

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

    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!😁😘

    #HEDS #POTS #IIH #RheumatoidArthritis #DevicsDisease #wheelchairbound4x #OpticNeuritis #DoubleVision
    #gastreoparesisSUCKS !! #PituitaryTumor #Diabetes #HBP #Asthma #COPD
    #Anxiety #Depression #NeurogenicBladder #chronicUTIS #KidneyStones #toomanypillstotake !
    #toomanydiagnosis !



    I don’t think I can handle doing the grocery shopping anymore, it’s just to hard and causes a lot of pain

    I want to as independent as I can, I want to help my dad wherever I can but grocery shopping takes like 2 days to recover from # nmo #ChronicPain

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    A great patient empowerment story here on the Mighty: Go read "This Is Not MS' by Tamanika Zinger

    I love this story: 'This Is Not MS' -- How Four Words Changed My Life With a Rare Disease

    "Nine years and three neurologists — this is what it took to get my diagnosis correct."

    Sound familiar?

    Tamanika's story, "'This Is Not MS' -- How Four Words Changed My Life With a Rare Disease," starts with her and her doctors trying to pinpoint MS-like symptoms, plus all the self-doubt and suffering that goes along with that. But she perseveres and finally finds that right doctor, and together they unlock the secret: she actually has neuromyelitis optica spectrum disorder (NMOSD). That key not only unlocks better healthcare treatment, but also her inner strength and spirit. Some of her insights:

    "Communication with your doctor is key. If your doctor is talking to you and you don’t know the words or terminology, ask the doctor to stop and explain. This is your body: know what is going on. Restate the doctor’s words using your own and confirm you are understanding correctly. It is easy to feel intimidated during an appointment with an expert, but remember, you are the expert on your body. You know how it feels and what is happening with it on a daily basis.

    "I felt empowered by taking part in my own health care process, which encouraged me to start advocating for myself and people like me in other ways... Taking charge of your health gives you a voice in all aspects of your care. It gives you back something you may have lost with your disease. It offers a feeling of control in a situation that too often can make you feel you have none."

    Tamanika even wound up advocating in front of Congress!

    For those of us struggling with diagnosis she says,

    "For those newly diagnosed, don’t give up! Don’t be afraid to get involved and ask questions. The more you know, the more empowered you will feel. And no one — and nothing — can take that away from you."

    Thanks, Tamanika!

    'This Is Not MS' -- How Four Words Changed My Life With a Rare Disease

    #nmosd #NeuromyelitisOpticaSpectrumDisorder #Advocacy #MultipleSclerosis #Depression #newlydiagnosed #MightyTogether #ChronicIllness #Disabilities #Caregiving #Disability #Support