Guillain-Barre Syndrome

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Guillain-Barre Syndrome
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    Guillain-Barre Syndrome or GBS. My journey so far.

    My journey with Guillain-Barre Syndrome or GBS has been difficult. I only had 11 days in the hospital and 6 weeks in an acute care home before they sent me home still broken with no real diagnosis. They listed it as spinal stenosis. I went into the Emergency Room unable to walk. They had a Neurologist come see me while in the ER and he diagnosed it as GBS. Yet that never made it into my chart.

    I`m frustrated because if that diagnosis was even referenced in my chart, maybe my treatment would have been more than them simply shoving pain medication down my throat whenever I was conscious. They could have given me IvIg and focused more on keeping my limbs functioning.

    I got home from the hospital in early November 2020. I finally saw the Neurologist in February 2021. He referred me to a specialist and in April 2021 he confirmed that I had GBS, he thinks. That`s what we`re treating it as.

    When I was released from the acute care place, my hands looked like commas, i.e. bent down at the wrist with no finger strength and my legs didn`t work either. At least to hold me up or walk. I could barely hold anything in my hands including my 2 year old son. The 2 months I spent away from him were hard but not being able to hold him was even harder. During that 2 months I couldn`t even see him thanks to Covid-19. Absolutely no visitors allowed in hospital settings.

    I`ve now been home for just over 2 years. My hands work a lot better now but I`m currently wheelchair bound and losing hope that I`ll ever walk again. Honestly, I`m trying to gain arm strength just so I can transfer myself instead of needing to rely on a caregiver for transfering in and out of my wheelchair/bed as well as needing adult briefs. I`m also trying to figure out better ways to maintain a healthy weight because I`ve gained a LOT of weight since all this happened.

    I`ve also been struggling with my insurance to get more then 7 physical therapy visits a year. I haven`t been able to find anywhere that accepts my insurance that also is set up for a patient who can`t transfer out of their wheelchair. I try to do the PT exercises but without proper equiptment my walking is none existent and my toes are dropping. Especially my big toes that are folding completely in on themselves making them very painful. The hardest thing is having my now 4 year old fear that he won`t see me for a long time again everytime I leave the house for a Doctor appointment.

    The pic is my son and me.

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    This was the first 2 weeks of #GBS #CIDP #gbsawareness #gbsawarenessmonth #Plasmapheresis post #COVID19 I had no idea the trials that lie ahead but I charged forward faithfully. My spirit had not been broken yet.

    #chrissystrong #brokennotdefeated #covid19survivor #covidlonghaulers #cidpwarrior #plex #spoonielife #spoonielife #chriss #HashimotosDisease #potssyndrome

    Question

    Help

    I got diagnosed in December 2014, I have never recovered. I don’t know what’s wrong with me. I have intense flare ups regularly that feel like I’m getting GBS all over again.
    #GuillainBarreSyndrome

    Question

    Help

    I got diagnosed in December 2014, I have never recovered. I don’t know what’s wrong with me. I have intense flare ups regularly that feel like I’m getting GBS all over again.
    #GuillainBarreSyndrome

    Question

    Has anyone had a Nerve Conduction or EMG?

    I finally got into a neurologist (on April 20) for severe back pain causing numbness in my extremities. Interested to hear anyone’s experiences! #BackPain #GuillainBarreSyndrome #PinchedNerve #ChronicPain

    Post

    Doctor With Zero Clue

    I believe I have CIPD. Unfortunately, I’m currently dependent on a GP for specialist referrals. I insisted on seeing a Neuromuscular specialist - the guy made an appointment 4 months away(!). I have severe pain 95% of my time - there’s no way I can wait!

    2 issues: how do I educate this guy about rare disorders? And is that what he went to med school for?
    -and-
    I’ve read that it’s critical to get early treatment in order to avoid permanent disability. This GP is acting as a human hurdle to treatment. If indeed it is CIPD, isn’t the guy somehow culpable for wasting time, thus contributing to the deterioration of my health?

    I have diagnoses of Ehlers-Danlos Syndrome, Fibromyalgia, ME/CFS, Burning Mouth Syndrome, IBS, Hypothyroidism, Severe Degenerative Disc Disease, and unattributed neuropathy, tinnitus and heliotrope rashes.

    Any wisdom/thoughts you may have are appreciated. Sending good energy to you.

    #ChronicInflammatoryDemyelinatingPolyneuropathy
    #ChronicInflammatoryDemyelinatingPolyradiculoneuropathy
    #GuillainBarreSyndrome
    #NeurologicalDisorder
    #BurningMouthSyndrome
    #Undiagnosed
    #UndiagnosedDiseaseNetwork
    #UndiagnosedRareDisease
    #RareDiseaseDay

    Post

    Fell out of bed this morning. I broke my fall by smashing my face into corner of night table. Now I’m bedridden again. #ChronicPain

    7 am I was getting into bed and somehow wound up on the floor. My wife heard things falling and ran in to help. Been using ice on worst bruising, especially my jaw. Now in bed. Hurts all over. Made #PostPolioSyndrome and #GuillainBarreSyndrome worse - dizzy, lost positional awareness, double vision, and every muscle is in pain. Otherwise I’m doing fine.

    Post

    Newbie

    I was diagnosed at the end of 2019 with Guillain-barre syndrome. The pain had subsided from how badly it was in the beginning, however, it still keeps me up all night. I'm glad to have been recommended this group so I don't feel so alone #GuillainBarreSyndrome