Reply To: Newly diagnosed- Ivig expectations?

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…