Bad "Flare Ups"/Residuals

This topic contains 3 replies, has 3 voices, and was last updated by  George Burgesser 4 weeks ago.

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  • #116322

    Sammi Bryant
    Participant

    I was diagnosed with GBS around the 23rd of March last year, just before my 19th birthday, and my recovery so far has been fine. Recently my residuals or flare-ups, whatever you call them, have been getting worse. This past weekend (15-17) I was wheelchair bound due to not being able to support my own weight. I’m wondering if anyone else has experienced this kind of dramatic shift in recover and if so, what advice you have for me.

    This whole thing has been pretty freaky to me so words of encouragement are also appreciated.

    #116323

    Jim-LA
    Participant

    GBS is almost always a single event that doesn’t repeat after it runs its course, usually about 90 days. More info here:
    https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Guillain-Barre-Syndrome-Fact-Sheet

    If symptoms are on the rise after a year, you could have a more chronic form of GBS like CIDP. You didn’t say what tests you have had to confirm GBS or what treatments you have been given?

    GBS residuals can plague us for months, sometimes years, before they finally abate. We need to be proactive about this in order to boost our ability to repair the nerve damage done by GBS.

    #116324

    Sammi Bryant
    Participant

    The tests I had done were a lumbar puncture and the needle to read electrical signals (EMG I think) which gave the doctors enough information to diagnose me. My treatment was strictly IVig.

    #116326

    George Burgesser
    Participant

    Sammi,

    I hope that you are feeling better. I was diagnosed with GBS in March of 2013 diagnosed with lumbar puncture and EMG. I was treated with IVig and released from the hospital.

    A few months later I started experiencing a return of symptoms. My doctor at the time didn’t listen to me and dismissed my renewed symptoms as not that serious. I waited a little longer and then decided to go over the doctor’s head.

    Within hours of a new EMG, I was back in the hospital undergoing another round of IVig. I have since been diagnosed with CIDP and have had one more flare up.

    This is not meant to scare you or imply that you have CIDP. You and only you know what your body is trying to tell you. You need to be your own advocate. If you are experiencing a renewal of symptoms so strong that you need to return to a wheelchair you probably need to push your doctor for another EMG test.

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