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.
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.
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.
~* KEEP THE FAITH *~
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.
May you continue to be blessed.
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
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.
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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