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Guillain-Barre Syndrome


Survivors' Stories page #3

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David    James Burnett    Julie    Rikki   Becky

 


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Age 7, 1977, My Trial With GBS
submitted 3 July, 2003 by James E Burnett

I would like to post this here since my GBS experience started at age 7.

Well my problem began when I lived in Baton Rouge, La. Me and my family were visiting my uncle in W. Monroe La., when my parents had been noticing for weeks that I would just be walking along and my legs would give out from under me. Well I just had a new baby sister and I was the oldest child, so my parents thought that I was just trying to get a little extra attention.

Well during breakfast my father noticed that I was making a fist around my spoon to eat my cereal and he asked me to use my spoon the correct way and I responded " I Can't" when I tried to oblige my father and use the correct way , I dropped the spoon because I hadn't the strength to hold it properly. Well at this revelation my father took me directly to the local clinic.

When I entered the clinic the doctor looked me over and did the normal examination, everything seemed fine till he hit my knee with the rubber hammer and there was no response. So then he preceded to ask me to look away and ask me if I felt anything, (in which he preceded to poke me with a small needle) well I didn't feel that either, so the doctor spoke with my father and I was Whisked to the nearest Hospital.

At this point my parents started getting worried, witch then started getting me worried. At the hospital they took me in and put me on an X-ray table and told me they needed to take x-rays of my back and asked my parents to wait outside. Well the x-ray turned out to be a Spinal tap, and I might have been young but I was no dummy, as soon as I saw the nurse put a tray down and the doctor picked up a big needle I started screaming and kicking it took about 5 doctors my dad sad to hold me down, he later told me it that it was tearing him up that he couldn't help me, and he could hear me screaming, so he had to go outside the hospital a walk around.

Well after that they admitted me into the hospital, and had no idea what was wrong with me. They came in numerous times of the day everyday taking blood, both my little arms looked like pin cushions there were so many holes from drawing blood. Well the next spinal tap they got smart and sedated me I think cause I didn't feel a thing that time. Then after another week of daily blood routines and another spinal tap, they told me that they thought I had a new disease called Guillain-Barre syndrome. At this time I was completely paralyzed from the waste down and losing all strength in my arms. My parents were nervous wrecks cause they told them if it reached my lungs id have to go on a respirator.

Fortunately, my mom says a miracle happened and everyone's prayers were answered as the paralyzation started to recede back from my waist down till it was gone and I could move again. Though I had lost all muscle tissue, and id have to be put in a wheel chair, and go through physical therapy.

Well when I got back to Baton rouge after the extended vacation. I had to go to a special school that had special handicap classes. The kids where we lived were really mean, calling me names like cripple and such, I think though maybe deep down it bothered me but it made my mom mad more than anyone, she would chase them threatening to woop them :P. when they would make fun of me.

I think it would have bothered me more , but the class I was in sobered me up to people that were a lot worse off than I was. I remember Freddy, he was a little colored boy with no arms and no legs in my class, and he was just as high on life as you could be he told jokes in class and was always cutting up with us, and for a person with so much against him, he had the most right of all of us in the special class to feel down but he wasn't. So Freddy really made an impact on me as a kid, I looked up to him and respected him because he was the real thing fate dealt him a horrible hand but he was the happiest kid I knew.

After about a year of the wheel chair I could finally walk, then another year I could finally run again, granted not near the way I could before but to run at any speed is a good thing. Throughout the rest of my childhood I had always remembered Freddy though we moved far away I never picked on a person for their misfortune in life, whether they were so called fat, ugly, or a nerd as a lot of kids like to make fun of or any disabled person. I was really the total opposite I got in a lot of altercations during school taking up for people who were being picked on, because every time I heard stuff like that I remembered Freddy, and heaven help anyone, that I would have heard pick on Freddy when I was well again.

So I guess what I got out of my trial with GBS, was a sense of reality, be thankful for what you have today, because it might not be the same tomorrow, and even when things seem bad there is always someone out there that may have it a lot worse than you do.

Well I'm 32 years old now and I have not thought about that time in my life till today. I had another of my bad migraine headaches and started to think that maybe it was related to my illness way back when, also I have always had times of numbness in my extremities that I had never thought could be related till today, maybe I even blocked that part out for a while.
so I thought id do some searching on the internet and see if other survivors of GBS had these same symptoms, Migraine headaches, numbness, excessive tiredness at times ( I just thought I was lazy but maybe not, or maybe a little of both) and my extremities fall asleep a lot during the night as well, ill wake up in middle of night and cant feel my arm have to bang in on the bed to get the blood flowing again and the feeling back in it.

Also I don't want any moms to get worried, IF these symptoms are still related , I'm sure it would be a case by case basis. Also I got through GBS and haven't had a relapse in (knock on wood) for over 20 years so that is a good thing.

Also my heart goes out to all those that had GBS during my time that turned out to be Fatal, I heard years later though my time was tuff, a lot of people that had the disease did not make it at all.. So I am thankful for just being able to be here today to write this post, and thankful to the wonderful people who put this site together to give people support.

Well sorry my post was so long but thought I should share my story. Oh almost forgot , come to find out how I got GBS,

My mom was big on vaccinations, my shot records were almost as big as a novel. I was one of the cases that got GBS right after getting vaccinated for the Swine Flu.

Though the "government" denies that its related....

I think there was too many of us for it to just be a bunch of coincidences. But anyways, That's my story.

Hope I didn't bore you all too much, and to the children that are in the same boat now that I was at age 7.

Just be like Freddy and keep your spirits up!
Don't let it get you down.
I know id been a lot lower spirits than him if id been born with no arms and no legs.....


Sincerely,

James E. Burnett

 

 


Rikki's Story
submitted  May 29, 2003

My name is Rikki. I was first diagnosed with GBS on 10/19/00 was IMMEDIATELY admitted to the ICU at Raritan Bay Medical center, where I received Wonderful care. I went into a coma within a few days and my fever hit 108 They were able to get my fever down in one night. I was given massive doses of Gamma Globulins and had Plasma Feresis done about 15 times, every time that I had the Plasma exchange done I would lie under my covers and FREEZE.

I was in the ICU for about 65 days and on the vent for just a little longer, I was so grateful to have that vent and NG tube taken out, not to mention the foley catheter! While I was in the ICU I was given passive PT, I really didn't begin active PT until December, at first I was walking in the parallel bars, then they tried me with a walker, but my knees buckled and that was the end of that. But by Feb I was waking with the walker and by March 2 canes. I got rid of the canes when I went back to work in April, and now just walk with 2 AFO'S, so when I began to recover it seemed to be lightning fast! to a point, I seemed to reach a plateau in April, and haven't seen much improvement since then. Don't get me wrong I've come a LONG way the only real lingering affects are the tingly feeling in my feet and the inability to lift my toes off the ground in a seated position or while standing. I still have to sleep in my Multi Podus Boots at night, because I still have foot drop, the last time I saw my neurologist, he told me that because I had recovered as rapidly as I had, remember I was in a coma for about a month and on a vent for 65 days, that it was natural for my recovery to reach a plateau, and not to worry I would continue to get better, just more slowly now. So all I can do now is have faith in God, and be grateful that I am as better as I am, not to mention that the 65 days on a vent with the NG feeding tube, made me loose a tremendous amount of weight, I went down to 170 pounds, and I am now at my goal weight, of 200 pounds, that I have been trying to attain for about 3 years now . So YES we will get better sometimes it just takes longer than we want. Have FAITH! And DO what your DR. tells you to do!

Peace Love and God's Blessings be upon you all!

Rikki


David's Battle
submitted July 18, 2003

My name is David and this is my story about my battle with GBS, the Guillain-Barrť Syndrome. GBS is a syndrome where the bodies own immune system attacks and damages nerves causing paralyses. GBS often occurs after a viral infection as did mine.


    Sunday November 7th 1999 was the first day I noticed a little numbness in my middle finger on my right hand. I didnít give it much thought and soon forgot about it. Nov. 10th is when I noticed that all of my fingers were a little numb and my feet felt like they were getting heavy. The following day I went to see a doctor and was told that I might be hypoglycemic, the doctor wanted me to come in the next day so they could give me a glucose test. That night my condition worsened and by morning, Friday Nov. 12th, I could hardly get out of bed and my wife had to help me get ready to go to the doctor. I didnít think I was going to make it and told my wife she better pack some clothes because I wasnít coming back home anytime soon. We arrived at the doctors office at 7:45 a.m. and saw a doctor immediately. I told them that there was something bad wrong with me and they agreed; I was not hypoglycemic. The doctor then performed some reflex tests on my knees and elbows, I flunked all of them, my reflexes were gone. The doctor then called and found a neurologist in Oklahoma City that could see me right away, this doctorís office was located at Baptist Hospital. My condition worsened even more and I had to be pushed out in a wheelchair. I arrived at Baptist Hospital around 12:50 p.m. and I saw the doctor right away. He did an EMG on me first thing; this is where they shock your muscles to measure nerve signals. After the doctor was through he said I had a very severe case of GBS and that I needed to be admitted to the ICU in Baptist Hospital. I was admitted to the ICU around 3:00 p.m. and was visited by my doctor about an hour later. He did a spinal tap on me; this is where they collect spinal fluid for testing. The results of the test were as expected, my protein level was way above normal, so the doctor ordered 7 plasma exchanges done on me; this is where they remove the plasma from the blood to try to slow down the damage to the nerves. Later that evening I started noticing that my arms would not work very good and my hands had quit working completely, my legs were not working very good either and my feet were starting to hurt. Iím not sure when I started having trouble breathing that night, there were no clocks or windows. I think I finally went to sleep sometime close to the next morning, when I awoke I was completely paralyzed from the neck down.   Therapist started working on me from the moment I was able to endure the pain. Two weeks later I was transported to Jim Thorpe Rehab where I spent 71 days. I was released Feb 3rd 2000 and returned home for the first time since Nov 12th 1999. My in-home therapy began Feb 4th 2000 and lasted until April 7th 2000 . April 17th 2000, I started going to out-patient and continued going until April 2002. July 1st 2002, I started attending the University of Oklahoma. June 23 2003, I finally became able to ride a bicycle after months of riding a stationary bike. 
   
    I've won the battle with GBS, but the fight still continues every day to get back to a normal life. Looking back to where I've been and where I am now makes all the painful hard work worth while. 

     
Thanks for taking the time to read about my battle with GBS.


Julie's Survivor Story

 

Hi,
My name is Julie and I am a Registered Nurse. I too am a GBS survivor, and
as they say " Nurses make the worst patients" This is true!  My experience
with GBS was about 7 years ago. I was at my place of employment, making
rounds with one of our docs. I told him my toes felt funny, he asked if I
had hurt my back, and I replied no. Well as the morning went on I felt
numbness and tingling in my fingers. Not thinking it was anything, I went
home did my nightly routine and went to bed. When I awoke the next morning,
it was like lifting bricks to get my legs out of bed. I got my kids off to
school and went to work. My noon it was a effort for me to walk, I felt like
I was swinging my hips to take a step. I finally decided that I needed to be
looked at so I made a appointment with my local MD. While I was being
examined the MD was stumped as I had no deep tendon reflexes, he then
referred me to a neurologist, who performed EMG's on my lower extremities.
Well to make a long story short I had no reflexes and the neurologist
informed me that I had GBS and needed immediate hospitalization. I talked
real fast and got him to agree to let me go home, to get my family in order,
I had 5 children 16, 12,11,8, and 6 at home. Despite the doc telling me not
to go to work the next day I too had to get things in order there before I
went to the hospital. Well none the less the next day I went to my
neurologist appointment and was admitted to St. Mary's Hospital. I had a
spinal tap done, and was started on IGG IV, I  receives 5 days of these
treatments and the night before I was to go home, the progression
accelerated. By the next morning I was totally paralyzed up to my waist. The
pain was totally unbearable. I was receiving IM pain injections every 4
hours. On Friday I was transferred to UW Hospital where I was to receive
Plasmapheresis. I was admitted to the floor at noon, a central line was
placed, and I was receiving my 1st treatment by 2:00PM. Thinking that this
would stop the progression was only a dream, by the following Sunday I was
paralyzed up to my shoulders, I too was repositioned q 2hrs, had to be
catherized due to inability to urinate, and was totally dependent on others
to care for me. This is quite hard when one day you are running after your
kids and the next you can't even scratch your nose! I received the
Plasmapheresis treatments for 7 days, when the progression finally stopped.
I'll never forget the look on my sisters face when I lifted my right arm to
scratch my nose with my hand splint, whop ever thought that such a simple
task would be such a big deal!! Well it was uphill for me from there. I was
transferred to the rehab unit, had to learn to walk allover again but it was
worth it. I was one of the fortunate ones who did not require mechanical
ventilation to breath and the GBS did not effect my swallow or sight. Still
today, I tire easier than I use to, have constant tingling in my hands and
feet, and am extremely sensitive to cold. But I am a survivor and a scrappy
one at that!

Julie P. RN

 


Becky

I AM A GBS SURVIVOR. I HAD BEEN FEELING REALLY UNDER THE WEATHER AND I WAS GETTING CONCERNED AND WENT TO THE DR. THEY SAID I PROBABLY HAD A VIRUS AND THAT I WOULD JUST HAVE TO LET IT RUN ITS COURSE. SOOOO ABOUT A WEEK LATER I WAS GETTING WORSE I DIDN'T WANT TO DO ANYTHING TOO WEAK TO WALK FAR SO I WENT BACK AND TOLD THEM THAT I WAS WORSE---DIFFERENT TR TOLD ME IT WAS A VIRUS FILLED ME UP FULL OF FLUIDS AND SOME SUPER ANTIBIOTICS AND SAID I WOULD HAVE TO LET IT RUN ITS COURSE BUT IF IT WASN'T BETTER  IN A WEEK TO COME BACK. I DID NOT GET ANY BETTER SO WENT BACK THIS TIME A DR CHECKED MY REFLEXES (THERE WERE NONE) SHOOK HIS HEAD AND SAID THAT THAT WAS STRANGE???

I GOT OFF THE EXAM TABLE AND FELL DOWN I MANAGED TO GET UP ONLY TO FALL DOWN AGAIN. THIS TIME HE DID ASK ME IF I NEEDED A NURSE TO HELP ME BACK TO THE WAITING ROOM? I HAD TRIED TO EXPLAIN THAT I COULDN'T FEEL MY LEGS. I DID MANAGE TO GET BACK TO THE WAITING ROOM ON MY OWN POWER THOUGH. HE SAID IF I WEREN'T ANY BETTER IN 3 OR 4 DAYS THAT HE WANTED TO RUN SOME BLOOD WORK THOUGH. ABOUT 5 HOURS LATER WE HAD TAKEN MY GRANDDAUGHTER TO DANCE CLASS, I DIDN'T WANT TO STAY HOME ALONE, AS I GOT OUT OF OUR CAR I MADE IT ABOUT 10 STEPS AND COLLAPSED. MY HUSBAND RUSHED ME BACK TO THE HOSPITAL. I REMEMBER GOING THRU THE DOOR IN THE WHEELCHAIR BUT THAT'S IT!! MY HUSBAND SAID THAT WE WAS COMING TO VISIT ME  ON THE 4TH DAY THERE AND THEY WERE LOADING ME INTO AN AMBULANCE AND TOLD HIM THEY WERE TAKING ME TO SPRINGFIELD MO TO ANOTHER HOSPITAL, I WOKE UP AFTER A MONTH AND WAS PARALYZED ON BOTH SIDES FROM THE NECK DOWN

 ONCE I COULD COMPREHEND THINGS MY HUSBAND TOLD ME THAT THE DR SAID I HAD GBS ON THE RIGHT SIDE AND A BRAIN BLEED ON THE OTHER SIDE. I HAD TO LEARN HOW TO WALK ,SIT UP, ALL THAT GOOD STUFF AGAIN. AFTER A LITTLE OVER A MONTH OF PT AND ALL THE OTHER THERAPIES  I WAS FINALLY RELEASED FROM THE HOSPITAL.. FORTUNATELY I NEVER HAD TO BE PUT ON A RESPIRATOR THANK GOD FOR THAT. BUT I AM NOW ALMOST 18 MONTHS POST ONSET. MY LEFT SIDE IS BACK TO NORMAL BUT THE RIGHT SIDE IS STILL VERY MUCH AFFECTED. TOTALLY NUMB THE WHO WAY DOWN. I AM WALKING THOUGH AND I HAVE BEEN WALKING WITHOUT THE CANE JUST TO PROVE TO MYSELF I CAN. I HAVE TAKEN A COUPLE OF FALLS BUT HAVEN'T BROKEN ANY BONES YET. MY NEUROLOGIST SAYS I DINT NEED TO SEE HIM AGAIN UNLESS I GET INTO TROUBLE AGAIN BUT HE ALSO SAYS THAT ONCE YOU GET GBS THAT YOU WONT GET IT AGAIN???????????I HAVE CERTAINLY HEARD DIFFERENTLY ON THAT ONE? WELL THAT IS BASICALLY MY GBS STORY. I HAD NEVER HEARD OF GBS BUT IT SURE MADE A BELIEVER OUTTA ME???

 

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