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hi i had GBS when i was 7. at the time i was a gymnast but only weighed 60 lbs. i was in the hospital for a week and lost strength in my legs and arms. i was told there was a chance i wouldn't do gymnastics again. however, two weeks after i got out of the hospital i was back in the gym and two months later i was competing. i am now 19 and i have played baseball, basketball, and football. the best workout at first is simple squats in a chair then try push ups. my dad was my coach in gymnastics, baseball and basketball and he pushed me to get better. but also i prayed to God to give me the strength and not quit. with all that i became a starter on my high school football team at 5 foot 6in. and weighing 120 lbs. i also did alot of weight lifting in 8th through 12th grade and was squating 335 lbs. so just push yourself and pray and everything will be there.
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My baby brother had GBS when he was 2 years old. My mother and I had countless nights at the childrens hospital in Fresno, Ca. It came so suddenly too. He and I were at our babysitters house and he was wrestling w/ our babysitters brother. He then fell off the couch and hit his head and back, hard! I panicked and he was crying histerically. We decided to put him in the bath tub to calm him down. My mom then came and took him to the hospital. That night, I found out what GBS was. He was paralyzed from the waist down. He went through rehab to learn how to walk again. It took him 2 weeks to do that. He was in the hospital for a month. He finally came home on my mom's birthday. That was the scariest thing that's ever happened to him. I'm just glad that he did ok from then on!
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All,
My Dad was just diagnosed with GBS yesterday and is going to be put on a ventilator tonight. He just started getting the Immuno globulin treatment and he's 76 so we probably have a long road ahead of us. For those that had this, what is the best thing my family can do to make him comfortable and help him get through this. Thanks.
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I am a 55 year old female that was in excellent condition until last August! My episode started off with a little sinus drainage which worsened. For 10 days, I constantly blew my nose. The last few days were really bad. I should have went to the doctor, but didn't. I noticed that I was a little off balance, and my vision was not quite right on July 31st.

I went to sleep that night and woke up approx. 4:30 in the morning. I stood up to feel my muscles give out in my legs. My vision was going quickly - very wavy. I quickly sat on the floor and scooted downstairs to my nephew's bedroom. He rushed me to the emergency. It took awhile for them to diagnose me. In fact, the doctor that did diagnose me had never had a Gillian Barre patient - she had only read about it. They said I was the worse case they had ever seen.

I don't remember much after that. I was told that my body was completely paralyzed within 4 hours, including throat. I was in the IC unit for 5 weeks. They induced a coma that I stayed in for 5 weeks. During that time, I went into cardiac arrest. I was told a piece a gause got down the trach somehow. My family and friends did 'range of motion' with me every day. I was told this was very important in recovering. I also went thru several plazma-pherisis treatments, which really improved my progress.

I opened my eyes 5 weeks later (Sept 6). Was transported to another facility for another 4.5 weeks which was living hell. I was paralyzed, had a hard time breathing - was totally helpless. Most of the nurses and techs treated me like "dirt". It was like burning in hell! My father, sisters and friends took care of me, since the help was soooo bad! I truly think I would be dead if it hadn't been for my them.

I was transported to a wonderful rehab center for the next 5 weeks. The staff was excellent. I met another Gillian Barre patient that was paralyzed from the waist down. I was released on Nov. 6. This should have been a day to celebrate, but ended up being the worse day of my life. I received a call the day before that my father had a major heart attack. He died the next day - Nov. 6. He was my best friend in the world.

It's been 6 months and I am recovering quite well. My balance is excellent, but hands are very numb and tingley. Right arm hurts to lift it. My core gets twitchy as the day goes on. It' a little difficult to walk up steps. Overall, I feel good.

I also plan to write a book on my experience, as I feel that others need to know more about this, and to prepare them for this horrible syndrome. I hope this has been helpful! Debbie
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My granddaddy is 78 yrs old and he has just come down wit this he now cannot use his arms or his legs. and is on a vent. i am worried about him. do not think he is going to make it. please help me[/img]
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Hey evreyone, my name is Ashley and i had GBS when i was a little over a year old. I was only in the hospital for a month but my doctors said it would take 6 months to a year to fully recover, i shocked my doctors when i was back to normal only 3 months later. They said I'm one of the youngest people to ever have it or the youngest, i cant remember but i was the youngest at the hospital in Texas. I don't know about today, someone might have gotten GBS younger then me. Today im 18 and ive never relapsed.

To everyone going through GBS, I hope your doing good and get well soon! Don't think about it too much, get something that distracts you so you can get better!
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Hi everyone, was just reading some of the GBS experiences and it brought tears to my eyes as i thought of the goodness of God. Just about a year ago, GBS got a hold on me. At the time, i was overworking my body, was not eating right and was not taking vitamins and so on. One day i came down with chicken pocks and was perscribed some medication for it and it was because of the fact that my body and my immune system was so run down, it could not handle the medication and thats how the syndrom started. It started in my fingers and my toes, u know the tingling and numbness and i started to get generalized weakness. I was fully paralized within a week of the first symtoms and was eventually put on life support and was fully intubated and u know the works. At first none of the doctors knew what was happening but it was a week into it when one doctor figured out what it was and indicated the medication i needed to deal with it..and that thing is so expensive....a five day supply which was luckily on what was needed cost over US$14,000.00. I am from the Caribbean and no where in the caribbean had this medication so we had to fly it in from the US. With GBS, early detection and early treatment is the key cause the longer ur muscles and nerves stay down the harder they are to recover. Luckily, i was treated early and was back on my feet in a month...Thank God....had to do a bit of therapy was back to work and playing sports and doing everything normal in the matter of about three months. Dont thinks everything is 100% but everythiing is normal now. Well, thats my experience with GBS. It was only the goodness of God and alot of prayer why i was so lucky to have come around so quickly...so as i said earlier, the key is early detection and early treatment and prayer. So good luck to all!!!!
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Hi, I just read some of your posts on here and I would like to say that my heart goes out to everyone that is suffering with this disease and their families. My father was told in 1995 that he had this terrible disease and is still suffering from it's effects today. Just last week he was told that he would need to get IVIG ther. and we just found out that medicare does not pay for any part of the almost $5000.00 per month cost! When he first got this disease no one told us that he would be fighting it for the rest of his life, or that it could get real bad again. I just lost my mother to cancer in December and the thought that I might lose my father to this disease is just heartbreaking. Has anyone ever had a relaps of this disease after so many years? I would be interested to hear about what you experienced. May god bless all of you!
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I just came home from the hospital today. I am 40 years old. I was diagnosed with GBS just last week. I am very fortunate, I was diagnosed pretty qucikly. It started with lower back,abdomen and leg pains. I went to the er and they found nothing. After 3 trips to the er and 3 trips to different specialists, the neurologist diagnosed it. I can barely walk, (but at least I am walking), get tired easy, and have a little confusion, but I'm on my way to recovery. I am fortunate to work for a family practice doctor, that is who pushed me and was able to get me with the specialists quickly. I just want others out there to know the symptoms so they can get they help they need quickly. I had never heard of this condition before, and while I do live in a small community, the doctors and nurses at the hospital had only had four other cases in four years.
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september 1,2001 i was 9 years old the smae year as when my brother was born i was at home and i couldnt hold my food down, couldnt hold my stomach for anything, and i couldnt walk and my mom said it looked like a had a stroke.and they took me to the hospital and the doctor told me and my mom i had gillian barre syndrome.
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hello im tom and i had gbs also when i was one from what i remember was very painful i remember cryin when my mom would brush my teeth it took 6 months for me to recover i was treated in Denver colorado now im 18 and nothing affected thank god
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Hello everyone,

I just wanted to add to the stories because I think it is sooo important for people to be aware of gillian barre syndrome since it's sometimes OTHER PEOPLE'S experiences that end up helping others instead of hospitals, doctors, or nurses. 11 years ago my mother was a very healthy 39 year old woman.... she went and got a flu shot for the first time with my father bc they ADVERTISE the friggin flu shot ALLLLLLLL over the place all the time!! Get it at the bank and the grocery store at a church just get it get it!! Well, she's never had one before but figured ok...can't hurt anything. Needless to say, my mother's feet "fell asleep" between that day or the next.....and it never went away. then the "pins and needles numbing" went up to her waist. My mother stepped on her own foot and didn't even realize it...that's how numb she was..... we all took her to the ER and after a couple weeks of her staying and with doing 2309482048304 tests.... the doctor all told us "We think it's stress"...................are you serious!?!?!? Great.........we've stressed out mom to the point that she can't walk........hm.........doesn't sound right...thanks SC doctors. My mother went to live with my grandparents in Florida for a few months of learning how to walk again (actually....she and my little sister learned how to walk together which was kind of bittersweet)......and while she was there she got a 2nd opinion from a great dr. in florida area. He told her she had GBS and it was from the flu shot. He asked he why she got a flu shot? and she couldn't really give him an answer............ He said to her.."the only people that should receive a flu shot are children and the elderly that are prone to getting sick........or people in general who get sick ALOT............that's all!!!!!!!!!" With that being said, I ABSOLUTELY CRINGE when it's flu season and I see people advertising "get your flu shot here!!!" "Why haven't you got your flu shot yet?!?!?!!" I try to tell my mom's story as much as possible..................Since then my mother (who had a very mild case thank god) is pretty much 90% better..........she still doesn't have some feeling in one of her feet and walks with a VERY SLIGHT limp............but she's doing great..........the doctor in florida told her she was lucky it was permanent from the neck down.......... a couple years ago...... a few friends of friends of our family had a nephew in the hospital for many many months and nobody could help them or figure out what was wrong................needless to say, my mom told them it was probably GBS and to have the doctors look into it....... that's EXACTLY what it was........and proper treatment and physical therapy was started after that discovery.............I'd HATE to imagine if my mother hadn't told them this how many more months or years they'd have to suffer.........only to be misdiagnosed to something irrelevant. Thank you to those who have been through the horribleness of this silent disease and are putting the word out as much as possible.

<3

M*
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I was diagnosed with GBS on May 6, 2008. I wondered what now! I seem to only "get" unusual health problems, I suffer from arthritis and sever migraines, also I have trigemanal nerve pain on the right side of my face. All at the age of 39. My symtoms keep coming to rear it's ugly head. The pain in my legs is terrible, feet too. I have always worked at least two jobs, and now a little over a year later, I still can't go back to work. My husband and son are very supportive. My whole family, too. I wondered when does it go away? I have been verry frustraed-my last big episode, back in the hospital, was caused by stress! What stress? I am home. My doctors said it does'nt come back and they don't agree about anything. This last episode-yesterday, I stayed home. I didn't see any point of them telling me it was stress, again. They don't specialize in GBS. I am in the Cincinnati, Oh area. If you have any helpfull ideas, please let me know. Thanks!
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Hi all, I too had gbs back in 1990, I was 30 yrs old at the time with a young family to raise. How scared was I!!!! After weeks of headaches, muscle weakness, numbness in my legs I went to the er where they admitted me with MS!! I thought this is it. Who will raise my kids, marry my husband, had the funeral all planned out.
I was one of the lucky ones with this silent disease. I was paralyzed from the nose down to the toes, some difficulty breathing. Used a wheelchair for almost a year and graduated to a walker after that. Got all functions back, I think. Still have tingling in feet after all these years. Always tired, but greatful I made it through.
To those of you who are suffering now please hold on. I pray for all.
Thanks for listening.
Pam
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Me too, encounter GBS on new years day 2006. We're on vacation in the Phils 12/05 for a month. We were packing our things for Manila (staying in the province in my husband hometown) when I noticed I having hard time raising my right arm. I ignored it. At 8pm we traveled to Manila but my right leg couldn't get up in the van. It is a 9hr trip, by midnight my speech started slurring. I felt weak. When we got to Manila when I went to the bathroom I don't have control sitting down. I could hardly walk. I told my husband what is happening to me? Take me to the doctor. My niece work in a clinic inside the mall and they diagnose me having mild stroke, they need to watch but they are not 24hr clinic so they refer me to Emergency Hospital nearby Manila area. Same diagnose. Took CT Scan, Xray. Check me in but they are not doing anything on. I stayed for a night and then my husband decided to transfer me to a world class Hospital. They admitted me to ER, three doctors look at me, they order another CT Scan and Check me in at 10pm. A neurologist came in my room and told us what I have is GBS. At that moment my body from shoulder down to my toes were paralyzed. We were suppose to go back to USA so we had cancelled our flight. I was hospitalized for a moth. I felt sorry for my 3 kids to be out of school. We came back here in the US in a wheelchair and still slurred speech. I continued my therapy here. With the help of my family I am 90% better now. Once in a while I still have cramps in my legs. What I am afraid of is what my doctor told me that It may come back again. I just need to stay healthy and make sure that my immune system strong so I won't get that virus again.
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