johnor

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  • January 22, 2020 at 5:15 pm

    Hi Elvira,

    Unfortunately there is specific timeframe for recovery with every single case being different depending on severity, GBS subtype, age and many other factors. Don’t give up hope, recovery for some people can be extremely slow and can take years to get back to something normal. There is a lot of information on line which can help you with better understanding the condition and timeframe.

    Sending best wishes to your brother.

    September 23, 2019 at 7:42 pm

    Hi Barbara – its very hard to give a right answer here. Recovery/Improvement is unique to each individual and everyone recovers at a different rate. When I was diagnosed 6 years ago I was 32 so significantly younger, ventilator was not required but I was unable to walk, use my arms, hands for a number of months.

    Each Neurologist I spoke with had the same message, yes if you are younger the odds of a faster recovery are in your favor but each case is unique in itself and boils down to a number of factors, it still took me 12-18 months to get back to somewhat normal. I have read and seen stories of people being ventilated for a much longer time than 12 days, sometimes weeks/months. Don’t give up hope, recovery can be painfully slow and she is still in what some would call the “acute” phase of the illness. Quoting from an online article

    “weakness can take half a day to over two weeks to reach maximum severity, and then becomes steady. In one in five people, the weakness continues to progress for as long as four weeks”

    July 23, 2016 at 6:29 pm

    @rec60661…the onset of my symptoms was very rapid..less than two weeks to complete paralysis of my 4 limbs. Treatment (plasmapheresis) started on day 12 from the initial onset of mild symptoms. My biggest struggle in the year of recovery was the use of my hands, which were slowest to return…playing guitar really helped to bring them back thankfully

    July 22, 2016 at 4:32 pm

    @jlcliff30…yeah my recovery was better than the doctors initially thought. I guess you never fully recover from GBS regardless of the type (thats what my neuro says anyway)…and there is always some level of residual damage left over even if you dont notice. What he did say was the fact i received plasmapheresis and not IVIG was key to my recovery…but i’ve heard hundreds of different opinions on this so not sure what to believe.

    July 22, 2016 at 11:43 am

    Hi all,

    I was diagnosed with AMAN type GBS in July 2013 while backpacking in South East Asia (Thailand to be exact). My first symptoms were extreme abdominal pain followed by foot pain. Over the course of 2 weeks this progressed to complete paralysis from the waist down, arms, hands and abdominal muscles. I was treated in an excellent hospital in Bangkok where this type of GBS is commonly seen. I received 7 sessions of plasmapheresis and remained in hospital there for 4 weeks. I was then sent to my home country where i remained in hospital for and additional 5 months receiving physiotherapy etc. Overall recovery was a year and i am pretty much back to my old self. I still get some nerve pain now and then which i take Lyrica for…seems to work very well.