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? On November 6 2003 7:30am. I had my first introduction to the Virus of "GILLIAN BARRE SYNDROME/AKA: GBS. I was a healthy 58yrs male. I had just finished doing part of my job. Account Representitive for CAPITAL ONE (DEBT COLLECTOR). At the end on a phone conversation with a client, my tongue began to swell and breathing started to labor. I excused myself from work and drove (immediatley) home. Just a few blocks. I did have alittle difficulty driving. Once i got home I layed in my bed all day, until my wife came home from work. She immediatley rush me to emergency. Now the good part. From 8:oopm/pst 11-06-03 until sometime around 12:00pm Sunday 11-07-03 All the Doctors i.e.; MD's/Respitory/Nuerology could not ascertain anything as to my condition!*%?#@*!...........Anyway(s)>>smile. Too make a long story (even) shorter. My Daughter Teresa who suffers from Acute Asthma, got the attention of this one Doctor and she advised him "I WAS GOING TO 'STOP' BREATHING". He had them move me to ICU and just as I arrived in the room I CODE BLUE. Had I NOT been in the ICU AREA I "might" not have been around to write this!!!!! So the episode began. All the test, know what I mean. Yeap CHEESEBURGER WITh EVERYTHING ON IT/THE WORKS. BLOOD WORK; X-RAY(s): PLASMAPHRESES; HIV; SPINAL TAP. Like I said, THE WORKS. By the way! This was the first week. Well, days turn into weeks, weeks into month. Oh, did I mention I was completely paralized? And also my eyes were closed opend my eyes in January 2004 2 1/2 months later. I had "GILLIAN BARRE SYNDROME. We had never heard of the condition. No one could tell us How or Why. My quality of life went downhill. Respratory, PICKLINE for blood work >Outlet valve in my Veins. I fought all the common things to come along with being on your back un-able to move anything other than index finger on my right hand, My wife camped out in my room, refusing to leave. WHAT A TRUE WARRIORS SHE WAS. She camped out in my room the entire time I was in the Hospital. I was moved to A SKILLED NURSING FACILITY after 2 months.Well with therapy and a LOT OF LOVE I was able to come home on 11-24-04 "ONE YEAR TWO WEEKS" I still do not have full use of everything I could use before I got this "VIRUS" I still use the wheelchair. I use a Walker & Cane to get around. I do household chores and cook all of our meals (CHEF FOR 30yrs). I am "still" weak on my left side. My feet and lower legs are numb. So thats my encounter with "GILLIAN BARRE SYNDROM". I'm working on a Book this GBS. Got so much to say. An I Wonder. Why? WHY? WHY? Gillian Barre Syndrome is a SLILENT KILLER OF WAYS OF LIFE WITHIN OUR SOCIETY.

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Hello! Have a look at this post, you may find it usefull!

https://www.steadyhealth.com/topics/why-twice-it-happend-in-1973-now-again#340561

Best Regards
Billy
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:D Hi Billy,



I am living in the GBS terrifying "lifetime" nightmare too. I unexpectly became deathly ill in the later part of Dec 2002 and by Jan 14, 2003; I was literally on my death bed with Gullian Barre' Syndrome. All people I know, and I; had never heard of GBS before either. I had became real sick on my job and went home early in feeling very physically strange. I walked into my Mom's house and fell to the floor in front of her. I managed to get up, told her I was sick and went straight to bed; due to exhaustion, weakness, and fatigue. I had nausea, vomitting, uncontrollable diarhea, hot sweats, high fever, horrific pains in my body that one cannot even try to describe. I guess I could say it was like getting shocked by electricity or lightening while having a wet body. My mobility was impaired, vision blurred, and speech slurred, and then my Mom began to panic so, she had my older sister rush me to the closest ER. I couldn't even hold my own body up and I don't even remember any happenings non other than the terrible excruciating pain. I cannot remember everything. I can only tell you what family, friends, and medical staff has told me. I died a total of three times, once at one hospital, and once being rushed by ambulatory to a more equipped hospital; and then they stated I had my death in the 2nd hospital. I went through "The Works" as you had stated and I had no physical mobility what-so-ever. I was hooked up to the breathing machine, respiratory machine, had a trache, fed in my stomach by a tube, loss all muscle mass, and mobile functions. I had lived in the hospital from January 14, 2003 to June 26, 2003. ( 5 months) At one point everyone had given up on my recovery and was going to send me to a nursing home for permanent lving at the age of 39. By many prayers and faith, after living long months in the hospital, my Mother was polishing my toe nails, and one toe began to slowly twitch. I will never forget the excitement everyone shared together in coming to my hospital room to watch one single toe movement on a human body. I went home on June 26, 2003 wheelchair bound. I had to learn to walk, talk, speak, bathe, read, write, and feed myself all over again. (Just as if I were a tottler starting and training, learing in life.) I went through physical therapy for a year, finally arose from the wheelchair, forced myself to come out of the braces and off of the crutches; and I have been blessed. I am somewhat back to normal, but, I will afar from being pysically fit. I am still disabled and limited to what I can do. Although it is now three years later, I am in "daily" mucle pain, spasms of tighting of muscles, still can't walk normal, and I'm on no medication. After taking apprximately 20 different types of pills in the onset of all of this I had chosen to stop all pills permanently in 2004 in plannig to go herbal all the way. ~* MIND OVER MATTER *~ I still have off & on spasms, electrical shocks throughout my entire body, and numbness in my legs and feet. I do not think one ever does recover from the GBS creeping nightmare. I am in the process of writing a book too. Always remember that you are blessed. :idea: You have the gift of life, family, and friends; and then the chance to tell your story to help those in need of moral support. God Bless! Trish :D
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Hello
I am also suffered de GBS when I wa 6 year old. I would like to know what type of workout is good for get more strength in my legs without any harm.

Regards

**this post is edited by moderator *** *** private e-mails not allowed **
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All I can say is you guys are troupers. my husband recently came down with GBS (44) and I was devistated, nobody told us anything. He was in hospital for 3 weeks and is now out slowly recovering. I keep telling him he doesnt know how lucky he is and tbh it changed our outlook on things big time. I think more people should be aware of this condition as it is out there. Ijust wish the hospital could've helped us more instead of keep telling us they didn't know what it was until the day they let him out. Instead they frightened the c**p out of my husband telling him he could get really bad but without any explaination why or what would cause it. Bunky69 I really can feel for your wife you really cant explain how it feels not to know what is going on and all you can do is watch, I admire how she got through it as I was going to pieces after a few days, all my relatives were away and I had nobody to talk to. It was even harder with the 3 kids not been able to tell them why dad was ill and when he was coming home.
He's been out a week now but I'm really frightened its gonna get worse as it was a mild case I don't like saying to him but it scares me rotten.
I started a new job while he was in in all places a docs surgery, they were great there they helped me and mademe understand more than the hospital did.

Please everyone keep your fingers crossed and I hope you lot get back on top = keep your chins up.
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So I am healthy YOUNG teenager (I am now 19) I was 18 years young when it happend. Ok so I was released to go home about 4 months ago I was hopsitalized for 6 months Breathing tube feeding tube 3 permanent cathaders heart tube the works. I also became VERY VERY enimic( not sure of the spelling) I got 3 blood transfusions. And to top it off they hooked my breathing pump up wrong when they were tranfering and I almost died from lack of oxygen, lame huh? Well it was a long HARD road but Ive done therapy for the 4 months ive been out and im walking on my own and I dont use braces a wheelchair or walker anymore. But i got to say for some reason my tailbone is killing me all the time lol! 1 problem my dic oops i mean doc wont give me pain meds but I have been diagnosed with chronic pain syndrom doctors suck. O well im working my way back to health and everything will be ok. Sorry about the spelling :$
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Hello, my name is Rachella. I too had gillian-barre syndrome two years ago. I am doing great now. I also get tired at times. I am 47 years old, trying to get some exercise along the way by walking, swimming and trying to stay healthy. I would like to hear from anyone who would like to chat to in regards of having gillian-barre syndrome.Thank you for listing to me. :-)
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[my little one (grandson) whos 5 as still a long way to go it as been over 12 months now and still not much movements he is still dependent on ventolater and peg feed but at least he will have xmas day at home with his familly i still feel like crying every time i see him but the tears you hold back his smile lights the ward up, we can only dream for yet another miricle as we did when they told us he was brain dead i hope one day he to can sit and walk or even talk again
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Just want to let everyone know that a strong will can get you through this. I am a healthy 24 year old and still playing football, skiing, wakeboarding and hunting. When i was 12 i was dignosed with GB. Spent 6 months in the hospital, another 6 tring to get back to where i left off. Although their are some symptoms that never left. Partisapation is the key to life.
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Hello . I am a 43 yr old male , family man , paint contractor . This all started back at the end of April . I was having prostate trouble all the sudden , and was starting to have trouble walking . Saw a doctor , who gave me medicine for my prostate prob., but within a week I was being administered to the hospital . I was pretty sick , and could barely walk at that point .After being administered , I went into a coma , and was on life support . The coma lasted for a week , then when I came to , I was paralyzed from the neck down . At this point , I had completely lost my memory . Didnt know my own wife , my brothers , my mom , etc .
Dont even remember going to the hospital . I eventually regained the use of my arms , and legs . I went from a wheelchair , to a walker , then to a cain , which is where I am at now . Some days , at times , I dont use the cain . After six weeks of being in the hospital , I was able to come home . It still took a couple days for me to regain my memory . To this day I still can't remember even going to the hospital , let along even being there .
All I can remember is going to the docs just before the hospital . I now go to physical therapy every week , and work out at home as much as possible . Now my brain is functioning pretty normal , but now and then I see flashes , or tracers . My short term memory is kinda short , but slowly increasing . My legs are still the most difficult part to deal with , especially in the morning when I first wake up . A couple cups of coffee helps a bit , but most of all , a warm bath . My feet are still alittle bit tingly , and , or numb at times . Sometimes my toes hurt a little bit wnen I go to bed . One thing I've noticed is that when I sit down for a little while , the longer I sit , the harder it is to recover . I've been seeing a new doctor now for the past month , and he is great . He has me on cymbalta for depression , and vicodin for pain , as I keep rebuilding my muscle strenth . It also helps with the pain in my feet . He is the one who made the determination that I had gbs , not the hospital .
Anyway , to anyone who would like to reply , please do so at any time you would like . I would like to hear your story . Its been 7 mon ths now for me , and as long as I keep plugging away at physical type therapy , I am progressing . Good luck to everyone
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hi all im 29 and have had gbs 4 6 months now all though i am home i still have to take my meds and phsieo and have come depressed through it all. im lucky though as i have my 3 kids and caring hubby to get me through if it asnt 4 them il give up
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Hi Rachella ,

I am also a gillian barre survior . I just recently had my encounter with

this at the begining of may . Was in the hospital for 7 weeks . Now am recovering and rebuilding my body , and coordination .

I would like to talk to you . We could chat about it or something .

Post a response and i will give you my email address .... k

joe
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I had GBS five years ago, it started with me having a cold and bang next thing I knew my back was killing me my legs weren't working right and nothing helped. I went to the ER and they sent me home with a pain killer. The next morning I couldn't get out of bed so my wife called for an ambulance and from there it was three weeks in the hospital. I was parlilized from the waist down and only partially inthe arms but I did have to have a feeding tube in my nose,I couldn't swallow. I was like that for two and a half weeks when suddenly I had an itchy foot and I lifted my leg to scratch it, one of the best shocks I ever received. I immediatly called the nurses and asked for a wheel chair and headed for the washroom, no more lifts or po-chair for me. Three days later I was sent to Re-hab,my first day there I had to use a walker,thenext day a cane and on the third day I was walking on my own with just a little help when I tired. I progressed very rapidly from there and left re-hab a month later. I started an exercise program at the gym and I still work out at least three times week. I still have slight problems with my legs but I am able to walk 18 holes of golf once or twice a week. In the hospital I had the best care and with friends and family praying for me I seemed to gather strength. One of the best non-medical treatments I received from a friend was called Healing Hands where they pray for you while moving their hands in the air above your whole body, it semed to relax my mind and body. I am not a religious person but with all the prayers to the Virgin Mary said on my behalf and the medals and cards with her image on them given to me in the hospital I think that my recovery was almost miraculous.I was back to work after five months and haven't looked back. I have read many other accounts of GBS and my encounter while bad was not as long or griveous as most but we still worry about a second bout of this virus. A friend of mine has just come down with GBS and I am waiting for them to allow visitors so I can give him my support and show him that though it will take time you do recover.

Dave
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My daughter had GBS when she was 4yrs old (1975). Hers paralysed her eyes for 6 months and gave her general muscle/breathing weakness problems. She did recover and had few after effects. She went to her family doctor recently (11/20/2006) who told her there was no reason she could not take flu shots so she got one. Within 2 weeks, hospital and all the fun tests, she was diagnosed with GBS, the Miller Fisher variant again.

She is not paralysed now, but is weak, tired, her equalibrium is off, and her face and eyes swell periodically. She has no reflex response when tested. It is a strange thing, but after reading of other cases my daughter, now 36, is very lucky.
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hello, i pray and hope for all persons responding on this page to be trully healed and blessed and return back to everyday life, in jesus name. Now, i have a friend who is in the hospital for GB and no one knows what to do. this message is for trish, please post a reply letting everyone know what herba supplements you are taking. I'm doing some herbal research and would love to know what herbs help you best. Thank you and again my prayers go out to everyone on this message board.
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