Reply To: GBS – Original event plus four relapses

April 7, 2019 at 10:12 am

I was diagnosed in may 2017 , first started in my feet worked its way up paralyzed me for close to 2 months,thank god it did not get to my lungs,i had bells palsy on my right side of my face so bad they thought i was gonna lose my right eye, they done a spinal tap and determent i have GBS, i couldn’t walk move my arms chew food, i felt helpless , im a guy who never really needed help in anyway but i had to break down and receive help, my daughter is a LNA , while in the hospital these younger kids who were LNA had to help me i felt so ashamed, helpless, sad cause i had to have people take care of me..I was in Portsmouth NH hospital for almost 3 weeks, 5 ivigs i got a little better they sent me to rehab, was there for about 2 weeks i had a relasps they still wanted me to just keep trying pt well it wasnt working so i demanded to go back to the hospital after about a day of bitching and so on i was finally sent to Mass General in Boston, where i had 5 more rounds of ivig after about 2 weeks i start to get some feeling back, so on to rehab again where i regained a little more strength and progress after a few weeks there i was sent home with in house pt , a visiting nurse and so on….I was still getting ivig right up until last week which made about 25ish total..I still get tired easy ,pain in my joints all over my body they come and go, ive had ringing in my ears for almost 2 years now…They say it could take up to 3 years for this to all go away,im going into my second year next month.I love alone i take care of myself, i have alot of family who live close to me i have 4 brothers and 1 sister and my mom is still with me at 87…My daughter is 26 she lives about 15 minutes away from me….My ex wife has been great, we have a awesome relationship now..If anyone has any question about this horrible disease please dont hesitate to ask me ill try to answer them as best as i can….Please take care of yourselves this disease sucks…Hopefully congress does more research about this terrible disease we need it, god bless you all and always remember your not alone…Thanks for reading my story Paul Knowles from Seabrook NH…