Gillian Barrie Syndrome
Posted , 3 users are following.
Hellow its me been here many times over . Im sure some remember me . Well since 4 years this year i still dont feel my self waiting on neroligy to call been 1 year half but i did call them basically told me wont be till june july how sad our system has failed us . So still with all being crom start i was hospitalized over year transfeeed to rehab but i still now i been home past while now i still cant walk far on my own still using walker my wheel chair . Itry use my walker to get that exercise in but my breathing with copd has not been the best . I still feel nerve damage in my feet will it ever go away i cant always im slower at times is it lack of exercise ? sometimes i geel my legs heavier tben usual tingling still my feet some times in my hand could i have cidp thats what im thinking . Plus i occered thpe 2 diabetiez . BECAUSE i occured pnomonia few times they did broncoscopy and sucked up muchs plug now it feels some what better . But woth gbs still in me ? i ceel tbis not my self . Any suggestions?
0 likes, 9 replies
Sway caroline70988
Posted
What country are you in? I don't know to much about GBS but it sounds debilitating. Can I ask how old you are?
caroline70988 Sway
Posted
Hi hun im 53 this year many say i look 40 good think i feel 50 lost lots weight i was life support 3 months also white count blood transfusions
caroline70988
Posted
also might add that had flue shot and kidney infection i fought hard to get rid of with antibiotic s for 4 mouths but was definetly from flue shot because i got flue shot sept 15 got sick October 25 mind u two week after flue shot i was deteraiting shooting me out tve hospital 10 days straight saying was all in my head . I ive in ottawa Ontario Canada yes free health card not issues getting in basically guess ill have park my ass at hospital cause its already been year sio since i e been waiting get in .Plus dont think tbey should close my file at hospital .
dawn68509 caroline70988
Posted
Caroline it can take years to recover from gullien barre syndrome it is an awful illness many get it from the flu shot there is a gbs group on facebook if you go on there if u think u are getting worse please see a dr again
Sway dawn68509
Posted
I've heard people getting sick from the flu shot. I've always gotten the flu shot. You GBS from the flu shot? I saw this guy on a reality show lose a couple hundred pounds and then he got GBS. I'm sorry you have to go through this. I hope you recover fully. What are the next steps for you?
caroline70988 dawn68509
Posted
I have talk to my doctor starting to think know one cares i tell him all the time i finally talk to nurse at nerogy place said i have to wait i said ive waited 1 balf how much longer its sad yes been 4 years this week been feeling very weak, I actually went line but it was states but i do go on face book ill check it out asp . Thank you so much
caroline70988 Sway
Posted
Think i pray every day crom some one being very active to very ill . I will go back to gym put some love to it keep my mind active also go in emergency think its best
caroline70988
Posted
sorry meant its 4 years since this happened 6 months life support for 3 months icu 4 times transfered after once trig was sent rehab sad part is it took them 10 days shooting me away till my hubby called ambulance they came asked me one question went into comma. Took 2 year half fully walk but im sfill slow i cant part with out walker long distance wheel chair
caroline70988
Posted
I thank you so much about face book so on i went on some lady works gbs foundation going contact me awesome . It is such bad disease every thing in the video was the exact thing . Bing carried by lifts so on . When i was at the one hospital 6 months every one my family thought i was going to die .The were told might happen but i kept waking up here and there briefly then would pass out again . Now since it took them after they admitted me took them another 10 days to do spinal tab . SAME doctor finally chef of staff and doctor tgat kept shooting me out for 10 days admit me finally then another 10 days to do a spinal tap why they take so ling to do this . The point also is that apologize to me came room why because there worried i might sew . They took after two years still barley could not walk took away canada care some guy cane my home said oh u can walk little so u must be able wash your hair so on i said barley hardly could pull my hands over my head . now im still shaking here there during days im still very slow i still have issues with my feet half way up my legs numbness and think its called nerve damage . but my hands still feel tingling now and again . I got sick lots through this time thinking could it been due to life support machine? i read up during my time they had issues i kept getting fluid in my lungs getting sick like 10 times a year gotten lung nasal infections most i worried about lungs cause when i got out the hospital i had gotten blood clot in my right lung do got admitted again two weeks . The rescue team workers had to get me out the apartment cause elevator shut down . The guy was amazing told his team im sorry im staying with her god bless him for helping me . This year again since summer had pnemonia 5 times did broncoloscopy done sucked up mucus plug after that every day been feeling so much better. now i see if your in states u can sew in canada theres law stipulating you can t . SO now waiting to see if i have cidp i tbink pretty much i have it the signs are there . . I am sorry my hands shake lots when i am writing sorry for mistakes . its ammune deficient . i am always getting sick .