Paul Knowles

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  • 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…

    March 7, 2019 at 8:19 pm

    Thank you Michelle im doing my best, i get depressed and get in my head…I have a couple great days not many symptoms then bang 2 bad days, tingling in my feet, feels like im drooling , alot of joint pain…I not on any meds except ivig once a month…I am glad i joined in with you guys talking about it helps…Thank you..

    March 7, 2019 at 7:37 pm

    Ive got ringing in my ears ive had sense contracting GBS…In May of 2017 i was diagnosed…

    February 9, 2019 at 6:33 pm

    Hi i was diagnosed in May 2017 , it started in my feet and went up my leg, then it went right through my whole body, thank god it didn’t go to my lungs. I still could not tell you how i contracted GBS.I went to the ER in Portsmouth NH they thought i had a pinched nerve in my back, so i went to a back specialist he said it wasnt that and sent me home…I got home it started to go up my legs it got worse and worse as the day went on, so i figures id go to bed and be better the next morning, i woke up in the middle of the night to go to the bathroom i stood up and fell flat on my face i had to feelings in my legs they wouldn’t move, so i yelled to my brother who was living with me at the time he came in and picked me up and sat me in the living room, i tried to stand up and couldn’t we called the ambulance they brought me back to Portsmouth NH hospital this time they done a spinal tap and figured out that i had gbs.So they admitted me i had 5 ivig’s i felt a little better so they send me to rehab i was doing pretty good for a few days then all of a sudden i had a relapse so they sent me back to Portsmouth Hospital, they couldn’t do any more with me so they sent me off to Mass General Hospital in Boston Mass, i had a team of neurologist who start ivig again, they check on my every morning i was they for over 2 weeks till i was strong enough to go back to rehab, was there for 10 days then they sent me home with home pt, i am still be treated with ivig once a month….Its a terrible disease i was so scared, i still get tingling, numbness they say it will go away in time i am now almost 2 years into this and still being treated….Thank you For listening Paul Knowles Seabrook NH…