6 Years Post GBS

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  • #117133
    johnor
    Participant

    Hi All,

    Long story which I will try to keep short. Diagnosed with GBS (AMAN/Axonal Type) in June 2013. Had complete paralysis of arms, legs, abdominal muscles with bowel and bladder loss. 7 Sessions of plasmapheresis followed by 6-7 months in a rehabilitation hospital. I would say today my recovery from a physical standpoint is about 95%.

    Residuals – Slight weakness in left ankle (No splint required). Normal gait when walking
    – Occasional electric shocks in my right bicep (take 75mg of Lyrica when flare up)
    – Very minor weakness of abductor muscles in both hands, noticeable during annual
    Neuro exam
    – On and off asymmetrical paresthesia throughout body. Happens out of the blue and can
    last days/weeks. Primarily in arms and legs.
    – Muscle Twitching, mostly in calf muscles of both legs.

    Present –

    10 days ago I had diarrhea for 24 hours as a result of some bad shrimp i ate. Since then I have had a heavy feeling in both legs and in the past 2 days the twitching in both calf muscles has become both noticeable and uncomfortable.

    Luckily I had an already scheduled appointment with my Neurologist this past Monday who gave me a full Neurological exam, everything seemed fine. He reassured me that it is very rare for GBS to reoccur as a result of such an illness. He did mention that as a result of GBS, the body can become hyper sensitive to any illness which occurs in later years.

    However I’m curious to hear from others who has had such an illness post GBS and whether you have experienced any neurological symptoms in the following weeks? This is really the first time I have been sick in years so I would be keen to hear from others and if they have experienced anything similar.

    Thanks!

    #117174
    SuzyQ
    Participant

    Hi there, I’m not post-GBS yet, got it in March of this year. But your post is very informative and positive, so thank you.

    #117184
    Morany Trujillo
    Participant

    Hi, I had GBS in 2017 and I feel every time I get sick and/or stressed, I get residuals. For example, I’ll feel tingly in my feet for a day or 2, or my hands. Sometimes it’s parts of my face, etc. Sometimes I feel tingly/numb in areas where I have not felt that before and it is really random. As far as heaviness in the legs, yes I have felt that too when I’m sick or right after. Muscle twitching not so often but I do get it in my biceps and calves and it is very annoying but doesn’t last long. What I do to keep calm when I get these symptoms is to prove to myself that I don’t have weakness, so I do some squats, planks, walk up stairs, and sort of take a baseline and make sure I’m able to do the same amount each day, it assures me there’s no increasing weakness.

    My neurologist said if it is not persistent, not to worry about it. The thing is, after having had GBS is nearly impossible not to “worry”.

    But yes, flare ups for me and very common and scary, I think they always will be.

    #117265
    Richard Chlebecek
    Participant

    I had a severe case of GBS 5 years ago. I experience many of the same residuals you have. Nerves seem to come and go at times (face tingles, hand tremors, etc.). I’ve learned to ignore most of it. I have not experienced an illness that brought on effects such as you described, but I could certainly see how something like that could happen. My closest example has been a sleep study where I stopped breathing 67 times per hour. Normal is 3-5. Neurologist says that GBS weakens the entire respiratory system and put me on a CPAC machine. I suspect the same weakness occurs throughout the body.

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