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Hi, I have Crohn's Disease and in November 2004-I went to the doctor and they said I had pnemonia. But I knew something else was wrong. They ran tests for hepitatis. I did't go back to the doctor, I went straight to the ER. I could not feel my feet, my hands were numb and my legs didn't want to move. I also had trouble breathing. I was at the hospital for about 24 hours and they did a spinal-tap, discovered it was Guillian Barre'. I was in ICU for a week, had plasma and gamma-goblin. After ICU, I was in the hospital for 2 weeks, rehab. They gave me Neurotin, a realivtly new (I think) drug for Guillian Barre'. I went home at the first of January and had OT's come to the house, I was not able to walk until the middle of June. The pain is horrible. Now this is 2/2006 and I still have leg pain and tingling sensations. I was on the Neurotin for almost a year. Now my daughter's mother-in-law has just got it after having the flu. She is in the hospital and also has athritis. I got Crohn's when I was 15 and I am now 50. I really believe it is an auto-immune system disease. Both Crohns and Guillian Barre. She is also 50. If anyone has any new info about Guillian Barre' please let me know. Thanks, jt

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Hi! I am very sorry to hear you have to struggle with this terrible disease. Yes, it is an auto-immune disease. I know because my best friend’s mom suffers from it. It came so suddenly, out of the blue when she got sick with flu and suddenly lost her ability to move, couldn’t breathe, and was taken to ER immediately that night. I was with my friend that night, it was awful especially because we knew what on earth was going on.

I think that this disorder resembles RA because in both diseases antibody cells attack the myelin sheath.

I read that when people eventually get better and recover that they don’t suffer recurrent symptoms but this is not the case in my friend’s mom. She has periods when she’s well and periods when she’s not and when she needs to be hospitalized again. She also has constant back problems and pain no matter whether she’s experiencing the GB symptoms or not.
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My mom was diognosed with G.B.S. in July 2005. She to had all those symtoms. They tryed to tell her she had Burgers desease from smokeing. It took Doctors three months to diognose her right. It went to the point of her longs shutting down Parilyses, and finaly a spinal tap. She to takes Norotin. She was recently told she has developed fibromyalgia also. She has cronic fitigue, mucle pain, insifecient Memory. She has had two plasma treatment due to relapse of the G.B.S. And it could be that she need them on the regular basis.
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Hello To All GBS Survivors,

I am strong GBS survivor, Trish Shackelford.

Today, I still live in the GBS terrifying "lifetime" nightmare.

In the later part of DEC 2002, I unexpectedly became deathly ill, and by Jan 14, 2003; I was literally on my death bed with what they call... Guillian Barre' Syndrome. %-) Everyone I knew at that time, and I; had never even heard of the creeping GBS before. I had became terribly sick on my job and went home early in feeling extremely tired and physically strange. I walked into my Mom's house and fell to the floor directly in front of her. She was worried and repeatedly asked me if I were alright. I struggled and managed to get back up, told her I felt sick and went straight to bed; due to exhaustion, weakness, and fatigue. I had nausea, :'( vomiting, uncontrollable diarrhea, 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 o.O shocked by electricity or lightening while having a wet body. My mother tended to me all night and by morning I was totallly out of it. My mobility was impaired, vision blurred, and speech slurred, as I painfully in tears begged for someone to bring me my Grandmother's walker. They stated that they thought I had lost my mind 8-| when I asked for the walker. I tried to walk with it while my legs were like jello, as I raised them awkwardly higher than the handles of the walker; and then I had rushed and basically fell on the couch. Noone could understand ? my speech nor what was happening to me. At this point, 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 painful experience.

I cannot remember much of anything that happened for approximately a half of a year. I can only tell you what family, friends, and medical staff has told me. They have stated that I had three near death experiences.

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 third near death experience in the second hospital where I remained to reside. I went through ALL "Tests & Blood Work" as I had no physical mobility whatsoever. I was hooked up to a breathing machine, respiratory machine, had trachea, fed in my stomach with a tube, loss all muscle mass, weight, and mobile functions; and then was paralyzed.

From January 14, 2003, to June 26, 2003. ( 5 months) I had lived in the hospital. At one point everyone had given up on my recovery (including me) and the hospital was going to send me to an out of state nursing home for my permanent housing at the age of 39.

Through thousands of prayer lines, strong faith, and moral support from many caring people; after living long months in the hospital, one afternoon my Mother was polishing my toe nails, and one toe began to slowly twitch. I will never forget the joy XD I seen in my Mother and the excitement everyone shared together while all came to my hospital room to watch one single toe movement on a human body. I slowly gained mobility through therapy and finally went home on June 26, 2003, a vegetable 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 totter training, learning, and starting life anew.)

In 2004, I went through physical therapy for a year, finally arose from the wheelchair, forced myself to come out of the leg & feet braces in which I still have to wear sometimes; and I got off of the crutches. I have been blessed. I am somewhat back to normal, but, I am far from being physically fit. My muscles are still lacking mass, and I get tired easily, and then I'm limited to what I can physically do. As much as I hate to say this and often get :$ embarrassed; I am a disabled 40 year old woman. Although it has been three years from the onset of GBS, I am in "DAILY" muscle pain in experiencing spasms in tense tightened muscles, still can't walk normal, and I'm on no medication.

In 2005, after taking approximately 20 different types of pills in the onset of all of this, I had chosen to stop all pills permanently and to go HERBAL all the way.

~* MIND OVER MATTER *~

In 2006, I still have off & on spasms, electrical shocks throughout my entire body, and numbness in my legs; along with stiffness in my feet every single day. The pain alone is stressful. I do not think one ever does recover from the creeping :-S GBS nightmare.

The only thing I knew to do was to come off of all meds, go HERBAL all the way, which is much safer for the bodies immune system; and to learn to adapt to the daily pain.

EASIER SAID THAN DONE...OF COURSE.

Always remember that you are blessed. :-|

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

When I was strickened with GBS--

I was overworked and under a lot of stress.

AVOID STRESS at all cost!

Stress is the #1 killer of mankind.

PS I think these two web sites will help individuals understand GBS better.

bugsmart.com.au/content/view/26/48/

phoenixneurology.com/gbs_symptoms.shtml

~* KEEP THE FAITH *~
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Hi there. My name is Toni Williams.
I got GBS when i was only 15. and i got the 'miller fisher' strain that most middle aged men get. it was horrible and my family suffered as much as me. i knew i'd be ok but they had a hard time. my GBS was detected very early. i basically woke up paralysed and cross-eyed. within 2 hours it had worsened and i was just lucky my doctor suggested it first up.
I had the plasma treatment and that worked really well.
I was in intensive care for a week and then in a normal room for a week also. i told my mum that i would be out in 2 weeks and i was. In 4 days, i went from wheelchair, to walker, to walking stick to walking.
They were all amazed at my recovery. there was one stage where my lungs were just about gone and i was told that if i wake up with a tube down my throat not to worry. i was 15... my mum was driving back home to get clothes (2 hours away from the hospital) and they told me not to worry.
the next morning i woke up and i have improved so much they were stunned.

the only persisting problem that stayed is if i do any strenuous work with my arms, then they ache for hours beyond anything panadol would do. i believe i was one of the lucky ones..
that is my story of GBS.

it was amazing to read yours Trish. I didn't know what it was capable of.
You're amazing to have lived through it. kudos.
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I am so glad to here that you are doing better. My father had GBD, I don not know alot about it though. I was wonderind if anyone knows if it is also genetic. My father almost died from it aswell. They had to reteach him how to walk and to speak. Atleast that is what I was told.

May you continue to be blessed.
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hi

My name is katie 42 years of age,i have 5 young children.i am blessed to be back home with my family.After suffering from gbs :( . i cant belive quick i have recoverd after reading how long it has took oter people to recover.My experance over the weeks had been very frighting both me and my family.When i went to the doctors they told me i was strest and tired loking after my family.The doctors told me to go home and rest :!: even know the pain i was going through,untill one morning i woke up and could not move both legs and arms,pluse it was difficult for me to breath.I was taken to ER then addmited to hospitel after lots of tests i was diagnoised gbs three days later.I was given treatment, luckly i could feel it working, i started to feel sensations in my hands and feet.Gratfully i am back with my family and am managing to cope some good days and some bad days. I am so pleased that i can wake up feeling my feet and hands. :!: and be a part in my childrens life again :!:

I would like to thank my friends and family for all their prayers at a difficult time of my life.

:D yours sencerly katie
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I suffered from this disease when I was 8 years old. I was at my aunt's house playing monopoly with my siblings and cousins and I tried to get up and could not move my legs. Within minutes my whole body was paralyzed and my joints became all twisted. It was the most painful experience of my life. I was in the hospital for about a week. While in the hospital I had allergical reactions to most every food I ate and absolutely no control over my bladder or any part of me. I was on an IV and respirator and I took about a hundred pills a day. The doctors didn't know what was going on. At the time I suppose this disease wasn't well known. Anyway, they diagnosed me with rheumatoid athritis. I was on medication until I was 16 and I had to have weekly check ups with the doctor. I only recently just discovered the name of the disease and I am 22!
I have been in good health since I had this syndrome, but my body is still very weak. I have no knee jerk reaction, my bones are weak and my breathing is very heavy. There is not too much I can do physically but I am very happy to be alive.
I must say that it was the prayers of the people around me that got me through that rough time.
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Just spent the past week in children's hospital with my 6yr old. He has been dx with gbs although they couldn't do the spinal tap successfully. They attempted 2x but could not get any fluid. The dr from the start felt it was gbs tho. He woke up one am and could not move his legs or stand on them. I just found out another child in his classroom has been admitted to the hosp with similar symptoms. Do you know if this is catching? We just came home today so i am on the internet trying to find out info. Thanx
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My name is Hailey and I am 21 years old. I was diagnosed with minor (thankfully) Guilliam-Barre Syndrome when I was in high school. I was pushing squats in my Body Development class when suddenly I lost feeling in my entire left arm and dropped the bar. My teacher didn't care that I was suddenly injured somehow but of course cared very much that I had dropped his expensive equipment. I was very scared and went home early and showed my mom that I could move my arm very little. She took me to my chiropractor whom I had been seeing regularly since I was in 7th grade from my first "Pinched Nerve" experience which took me several months to recover from. Now I'm wondering if it was the GBS (couldn't walk because my left leg/foot would fall, numbness, and lack of reflexes) but I dont know. My chiropractor said he could do nothing and refered me to a Neurologist. I went through the painful process of having a large needle pushed into my arm about 50 times. After that and more minor tests he declared my minor symptom. He told my mom and I that it was a virus that attacked the body and that my immune system was weak (I had been sick prior). He said that I could have had this syndrome for a long time and that with the squat bar resting directly on a central nerve down my arm it put enough pressure on it to damage it and cause the symptoms to finally worsen. I believe he also told me that the only real cure was physical therapy which I did daily by myself along with weekly visits to the chiroprator. I do remember it taking about three months and luckily it was only one limb recovering because otherwise I couldn't have gotten by. I couldn't perform on my dance team though or carry my school books and that crushed me, but it wasn't too bad because I remember the neurologist also telling me about another patient he had been seeing who had the same thing but MUCH worse and THEY were hospitalized! I couldn't even imagine what you have all gone through and I am very thankful that mine is minor and I do know that everyone is different. Since then I have been experiencing numbness in the limbs, especially my fingers, sharp pains, and many muscle spasms that last a day at times. Sometimes the numbness goes away after a couple days, other times it's several weeks, and rarely it's occured over many months. HOWEVER....

A couple days ago I was at work doing floral deliveries and I noticed I started getting an extremely minor wierd feeling in my RIGHT arm (before it was my LEFT). By the end of the day my arm was clearly losing about half its strength and I had problems lifting heavy things. I shrugged it off thinking it was another small numbness that would go away but its been three days and it hasn't gone away and if anything has gotten worse. This morning I woke up with a nasty cold. Are these related? I live with my boyfriend and he had flu-like symptoms a week ago and I was around him a lot trying to baby him to good health. From what I've been reading from other people's posts many have been diagnosed with GBS after having the flu. I find this interesting. I also just found out today that people with GBS CANNOT get flu shots??? I don't know exactly what that means which is what led me to this website. I am afraid my "more than a little minor" symptoms have come back and I'm scared. I'm going to go see my chiropractor next week. I am also searching for more answers.....please help.
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hi my husband is a survivor of GBS and he lives with pain everyday of his life I would love to know what kind of herbal products you recommend my e-mail is **** Thank you and keep the faith



**edited by moderator** **e-mails are not allowed**
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I am a concerned mother who was woke up by screams and sobs by my 8 yr old girl at 2 am. She said she couldnt move and couldnt move her legs. When she tried to it hurt. She had to go to the bathroom and wouldnt even sit up on the edge of the bed to stand. When I stood her up on the floor she cried that she couldnt walk. I helped her hobble to the bathroom. After an ER visit they did all kinds of tests which all came up negative. I am waiting on the results of one last test and it is the one for G.B.S. I pray it isnt positive. I just hope to find out what exactly it is so i can take care of my baby girl.
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I am a 59 yr old who has had crohns disease since 1975. I had surgery in 1975 and was basically pretty good until 2002 when had a serious flare up. One month later, I got GBS and was in the hospital for about 30 days and have had a full recovery. Recently, I had a flare up of the crohns and the doctors want me to take the drug remicade. I have read up on this and they say to talk to a DR if you have had GBS. Does anyone know if you can take this drug after you have had GBS. The gastroinestinal doctors want me to see a neurologist again. I am seeking any info from someone who had had the same drug prescribed.
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