Experiences of Guillain-Barre Syndrome and OT - Please Help

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Hello

I'm trying to do some research into Guillain Barre Syndrome and I was wondering if you could help me a little by telling me your experiences of the condition and also with reference to any occupational therapy you may have received and what sort of things the OT did. I would be very grateful for anything.

Lottie

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  • Posted

    hi

    a friend recently cured herself from the symptoms which began as an infection.

    she used jernigans neutraceuticals. hope this helps.

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  • Posted

    Hi I have developed actute post infection polyneuropathy (probably because of camplybacter food poisoning).  You mentioned jernigans neutraceuticals - which formula or product is this.

    Are there any other supplements that may help in speeding up recovery please?

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  • Posted

    Hi I was diagnosed with gbs in 1984 I was 19 years old,I went to the doctors with pins and needles in my hands and feet for 3 weeks I was back and fourth by the time it was getting weaker so doctor sent me for blood test, 2 days later I was rushed to the ICU and was put on a ventilation system by this time I was so weak I couldn't walk,doctors came and went asking me loads of questions about my condition it took me 6 weeks before I was moved to normal ward I had to learn to walk again I started treatment in the hydrotherapy pool but my upper body strength was weak too.

    I continued in the physiotherapy classes for people who had knee injury and slowly I got stronger but I still had very little muscle strength in my lower back, soon after I started with double vision that lasted about a month,it was awful,it took me 9 months to recover, or when the doctors discharged me,I just got on with my life,I would say I'm only about 90% recovered as I still have issues with my lower back and strength is not very good.

    3 years ago I went to a sleep clinic I was diagnosed with mild sleep apnoea, restless leg syndrome, periodic limb movement disorder insomnia and anaemia it was then thatchers neurologist told me I'd had this guillain barrie syndrome I'd never heard of that name until then.

    Now I'm in a support group on Facebook and have met lots more people like me.

    Everyday there are new stories of people who have had this, or just been diagnosed with it.

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  • Posted

    In April, 1965, while attending university, I was stricken with Mononucleosis. As a result, I subsequently came down with both Ascending Myelitis and Guillain-Barré Syndrome. Initially, it was not known what I had and I was placed in an isolation room, prior to being put in an ICU.

    The paralyses advanced to the t4 level; while in the ICU, there was a tracheotomy setup next to my bed in case I could not breathe; my ability to breathe was checked every 15-30 minutes.

    I improved from only lying flat on my back and being able to lift only one arm over to the opposite side of my body, to being able to walk with crutches and leg braces by mid-August, when I was released from the hospital. By Fall 1966, I had discarded the crutches and the leg braces. Then, in the mid-1990s, I had to be fitted with Arizona braces. Since 2007, my leg legs have grown progressively weaker.

    I have recently been diagnosed with peripheral neuropathy and bilateral stenosis, and can no longer walk or stand.

    They believe I may have post-polio syndrome, though they had not heard of the with Ascending Myelitis

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  • Posted

    April 20, 2015 I was admitted to hospital and the diagnosis was GBS.  I was put in ICU where I stayed for 3 months until I was moved to a rehab facility for another month and 8 days.  During the first 3 months, I had a trac, feeding tube, on ventilator and was paralyzed from the neck down.  My hands were curled in a fist position.  The ot worked with my hands by massaging them trying to straighten the fingers.  I had soft rubber balls they would put in my hands which I was to squeeze in an effort to gain strength.  

    Eventually, when I was able to move my arms, the ot added a larger rubber tube to the end of my toothbrush so I could brush my own teeth and also added this to utensils so I could try and feed myself.  Once I got to rehab, the OT traced my hands, made wooden paddles with Velcro straps attached, I wore these paddles for 3  hours every day on each hand and this finally straightened my fingers.  OT helped me with fine motor skills by pinching clothes pins that had different strengths, I also had to find small beads that were hidden in putty.

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