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Guillain-Barre Syndrome Survivors' Stories page #5 Lee's Story Solomon's Story Dan's Story Dwayne's Story Ruth's Story Sandy's Story Page #1 Page #2 Page #3 Page #4 Page #6
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This Page is waiting to be filled. Send me your stories and any information you would like to share. If you would like to make yourself available to answer the questions of those viewing this page please include an E-mail address. Send me your survival story to share with others on my website Lee's Story
Stumbled on to your website today and thought I'd
write you about my GBS experience which was about 9 years ago.
I had been very tired lately and attributed it to
the fact that I was working swing shifts. One day while filling out
paperwork at work, I noticed that my writing had become horribly
sloppy...worse than usual anyhow. Within a day my right hand began
trembling a little. The next day it was worse so I went to the Dr. He gave
me the usual checks and said that it was a result of being very tense and
nervous...to go home and try to relax. He told me that if it should worsen
to call him.
The next day it was worse. My whole right arm was
trembling and my left hand had begun to tremble. I went back to the Dr. and
he said I was VERY VERY nervous...go home and try to relax and if it should
worsen to call. My writing was completely illegible at this point and I was
having trouble balancing myself.
In the morning I awoke with my arms still
shaking. I had to take my morning pee. When I swung my legs around on the
bed and tried to stand up...I fell. My legs had begun to tremble and I was
very weak. My live-in girlfriend (now my wife of 7 years) became worried.
I calmed her by saying I wasn't going to go to work and would stay home. I
told her that I just got a little dizzy. She believed me and went to her
job. I called the doctor again and told him it was much worse. I could
barely walk and, like you, needed to use the walls to stay upright. He said
to drive right over.
By this time, walking was more like aimed
falling. I'd point myself where I wanted to go, push off, and keep my legs
moving. I drove there, signed in with my now useless chicken scratch of a
signature, and looked for an empty seat in the waiting room. I aimed myself
at the chair, pushed off and basically rammed into the chair. At the noise,
the nurse came running out. Seeing my condition, she helped me directly to
the exam room and the Dr. came running in. He called my father from work to
pick me up and take me to the hospital. I was about 25 at the time..... my
Dad came and CARRIED me to his car and took me to the ER.
I was admitted and was given a battery of tests
and scans over the next several days. I could not walk, feed myself, or go
to the bathroom myself. My eyeballs had begun to dance in their sockets and
my speech became erratic to the point where I had to really concentrate and
speak slowly to be understood. The Dr's at the local hospital were
perplexed. They thought it may have been an aneurism, but the scans were
negative.
My parents would visit me and begin to cry. I
told them not to worry and that God wouldn't give me any more than He
thought I could bear. I would just have to deal with it.
One afternoon the Dr. came in to see me. I asked
him very directly "Will I walk again?" He replied that there was no way to
tell because they didn't know what was wrong with me. I said OK and thanked
him for being honest. On the outside I was strong...on the inside, I was
petrified.
I was taken to the Cleveland Clinic and seen by
some of the best neurologists in the country. I was told to go to the MS
clinic....Oh my God... I have MS!!!!!! Or so I thought, and so did they.
By this time, I was still in a wheelchair, but had
begun to walk a little with help. They sent physical therapists to help
me. The first day they wanted me to walk (with the assistance of both of
them) out to the nurse station (about 20 feet) and back to my bed. I told
them I would not stop until I went to the end of the hall and looked out the
window (about 50 yards). They insisted that the nurse station was plenty
for one day.
I made it to the window and looked out. After
this, they realized I didn't need their help...I was too bullheaded to just
lay there and give up.
At the MS clinic, they wanted to do an LP. I told
them no and reminded them just who works for who. I told them that as long
as I was getting better, they weren't touching my spine. I had been all but
paralyzed for a week and a half and wasn't letting anyone NEAR my spine with
a needle. I did, however, tell them that if I began to get worse again they
could take a sample with a rusty needle and a plastic spoon...but not now.
A few days later, I was summoned to the office of
the Head of Neurology for the Clinic. That's when I first heard of GBS.
They could not prove it without an LP, but they were 95% sure.
Long story short...I kept getting better. I
returned to work after three months still using a cane. I used a walker for
a month and a half before that.
At this time, I'm 99% recovered. I'll never be
100% as I still get tremors in my hands, but they are minor and infrequent.
My wife and I have a soon to be 7 year old son and
I still work at the same plant.
I thank God for giving me GBS...it has shown me
how strong of a person I really am. I appreciate being able to walk to the
far side of the room, watching TV, playing with my son...even going to the
bathroom and wiping my own ass.
Feel free to post this little message if you want
to.
Fourteen years ago I was
pregnant with my second child, on a visit to my moms one day it was
nothing out of the ordinary, I took sick right out of the blue. I took
a nap on my mom's couch and that was the beginning of my nightmare, a
nightmare that still bothers me to this day.
I went to the hospital three times one doctor told me that I had throat infection and there I was in a wheelchair barely able to keep my head up, and after falling getting out of my car when I was going into the hospital, I was told I had throat infection. About two or three days later my boyfriend phoned my gynecologist and he admitted me to the hospital but................they didn't think anything was wrong with me, the only reason I knew they thought I was lying is because a nurse came in and asked me if I was having any troubles at home. I was livid. I could not even move in my bed and here they were asking me these stupid questions. One day the nurse came in and asked me if I would like to sit up in a chair and I said yes well that might have been a mistake she left the room and I slid right out of the chair not being able to help myself. There I was sitting on the floor in front of the chair, I could see the nurses station from where I was. I tried with all of the strength I had left to signal the nurses.........finally after what felt like hours the nurse saw me. She came in and said she would have to get an orderly to help me back to bed and when he was putting me back in the bed the nurse said you weren't lying were you. So I was sent to another hospital and they took a spinal tap and that is when they found out what I had Guillain Barre Syndrome I was put in ICU I could not walk, my voice was just a whisper, and to this day most of what I went through is a blur, but when I think about the first hospital I was in I feel really angry and hurt and keep wondering why they thought I was faking it.
I will have to continue the
story another time.
Thank You for letting me write
about my ordeal
M.Solomon
New Brunswick, Canada
m.solomon66@hotmail.com
Dan
Bitler's Story
GBS CAME TO ME IN MARCH 2002, IT WAS HARD AND FAST. WENT TO OUR LOCAL ER ON A SNOWY SUNDAY MORNING. HAD TO HELP A LADY THAT LOST CONTROL OF HER VEHICLE AND WAS STUCK IN A DITCH. A SIMPLE TASK WASN'T SIMPLE.
MY FAMILY PHYSICIAN, AND
HIGH SCHOOL FRIEND, WAS ON CALL AT THE HOSPITAL, AND RAN A BATTERY OF
TESTS, FINDING NOTHING, ASKED ME TO COME TO HIS OFFICE THE NEXT DAY.
THE FOLLOWING DAY HE INFORMED MY WIFE AND I THAT HE THOUGHT I HAD "GBS",
AND WOULD TRY TO FIND A NEUROLOGIST THAT WOULD CHECK ME OUT. I WAS VERY
FORTUNATE TO HAVE BEEN DIAGNOSED EARLY. I DON'T REMEMBER EVERYTHING
THAT HAPPENED DURING MY TWO + MONTHS IN ICU. I RECEIVED A LUMBAR
PUNCTURE, THUS CONFIRMING "GBS".
I HAVE BEEN READING SOME
OF THE STORIES FROM YOURSELF AND OTHERS ON THIS SITE. MANY ARE EERILY
SIMILAR TO MY OWN RECOLLECTIONS. PAIN AND BEING HOT ARE VIVID
MEMORIES, I WASN'T SO SURE I WASN'T IN HELL. I THINK MAYBE I WAS BETTER
OFF THAN MY FAMILY AND THE CAREGIVERS THAT HAD TO STAND AND WATCH.
MY LIFESTYLE PRIOR TO
"GBS" DIDN'T HELP THOSE INVOLVED IN MY TREATMENT. I FREQUENTLY WORKED
AWAY FROM HOME, AND WITHOUT FAIL WOULD CONSUME A 12 PACK OF BEER AND A
CAN OF CHEWING TOBACCO DAILY. IN ADDITION TO THE GUILLAIN-BARRE TRYING
TO GET A GRIP ON ME, WE WERE FIGHTING WITH DRAWL FROM THE ALCOHOL AND
TOBACCO. SINCE MY ADMISSION TO THE HOSPITAL, I HAVEN'T HAD
EITHER. ( FOR ANYONE THAT CARES, FOR A LOOOOOOOONG TIME, IT HAS REALLY
BEEN HARD TO ABSTAIN FROM THE TOBACCO). TOTALLY PARALYZED, STUFF
CRAMMED DOWN YOUR THROAT, YOUR NOSE, I THINK EVERY VEIN HAD AN IV, PLUS
THAT DAMN CATHETER, I WOULDN'T WISH THIS "SYNDROME" ON AN ENEMY.
TREATMENT CONSISTED
OF THE IVIG & PLASMAPHERESIS, AND I ALSO WAS ON THE VENTILATOR FOR AN
EXTENDED PERIOD OF TIME. I DON'T
REMEMBER, AND DON'T REALLY WANT TO REMEMBER, THE PHYSICAL THERAPY AT THE
HOSPITAL. I GUESS THE GIRLS THOUGHT THEY WERE DOING WHAT WAS RIGHT, BUT
THE TORTURE THEY PUT ME THROUGH, I WILL PROBABLY NOT FORGIVE AND FORGET.
THERE WAS MENTION OF
HALLUCINATING WHILE IN THE HOSPITAL, THIS WAS REALLY WEIRD. THE DREAMS
WERE SO REAL, AND MOST GENERALLY TERRIFYING. I WOULD ESCAPE WEEKLY AND
HIT THE UNDERGROUND, SCARY, IT WAS KILL OR BE KILLED. THAT IS SO MUCH
NOT ME.
THIS IS TURNING INTO A
DIARY, AND I DIDN'T REALLY INTEND FOR IT TO. THE STAY AT THE REHAB
CENTER WAS MY START TO IMPROVEMENT. THE PEOPLE WERE REALLY, REALLY,
SPECIAL!! FROM THE FIRST DAY AT THE CENTER, I WAS AWARE EVERY MOMENT
WHAT WAS HAPPENING. NO MORE DREAMS OR HALLUCINATING. THE THERAPY WAS
PAINFUL AND IMPROVEMENT WASN'T LIGHTNING FAST, BUT IT WAS STEADY, AND
SOMETIMES IMPROVEMENTS WOULD SNOWBALL. I WOULD SOMETIMES START TO FEEL
SORRY FOR MYSELF, BUT A STROLL THROUGH THE HALLS IN MY WHEELCHAIR WOULD
MAKE REALITY SET IN. THERE WERE PEOPLE THAT PROBABLY WEREN'T GOING TO
IMPROVE A WHOLE HECK OF A LOT. THE STAY SEEMED LONG, TWO + MONTHS.
THEY TOOK ME FROM TOTALLY PARALYZED, TO WALKING 100 FT OR MORE (WITH
ASSISTANCE OF A WALKER) PLUS SO MUCH MORE. ALL OF THOSE INVOLVED WILL
ALWAYS HAVE A VERY SPECIAL PLACE IN MY HEART!
TODAY I'M BACK TO WORK,
AND WHILE NOT BEING 100%, FEEL VERY FORTUNATE TO BE BACK. MANY THANKS
TO MY CO-WORKERS WHO HAVE HELPED CARRY ME.
I HAVE A LOT MORE TO SAY,
BUT NOT TONIGHT. BEFORE LEAVING, I WOULD BE DOING MY FAMILY,
(ESPECIALLY MY WIFE, SISTER, AND SISTER-IN-LAW) AND FRIENDS, A GREAT
DISSERVICE IF I DIDN'T MENTION THE PRAYERS, VISITS, CARE, CONCERN, ACTS
OF KINDNESS, ETC. THAT REALLY DID MAKE A HUGE DIFFERENCE IN MY
RECOVERY.
THANKS
FOR LETTING ME VENT A LITTLE AND ALSO OPEN UP SOME BY RELATING TO OTHERS
SOME OF MY MEMORIES.
BEST TO YOU,
DAN
BITLER
Dwayne Irvin's Story
My story begins in oct. 1988.I was sent to the er. There was already a superstition as to what was wrong, and the neurologist would be expecting me. As he told about GBS. I quite listening. I didn't want to believe I had what he was describing. It was true, and even at the late hour I was admitted into ICU the room filled with nurses and technicians. I still didn't want to believe. the next day my shunt for pp was installed. Therapy also began. I also had foot drop, weird dreams and pain in my feet and hands. I remember not being able to swallow and my repertory system loosing wind some how I dodged the respirator and feeding tube. I could tell by the expressions on different dr's and technicians faces and was told by a nurse that I was on the list for those installations. Some how miraculously the dr found that the GBS was headed in the opposite direction. Upon this discovery I was put on the regular floor. I was completely paralyzed one side of my face and all couldn't sit in a chair, with out being tied in it. Things seemed to get a little better I had had the max on the pp treatments the shunt could not stay in but a certain time. Then all of a sudden I started getting head aches out of this world that would make me sick. I have never thrown up as violently as then ( I still get these headaches and throw as bad) the dr. seemed puzzled at this and ordered another shunt and some more pp. He also recommended steroids though it was a last measure they were prescribed. During this pp they would wheel me down to the treatment after the second or third time I started getting sick after they got me back to my room. the rest were given in my room .things slowly progressed I was then sent to rehabilitation. after which was discharged mid December. The dr took me off steroids a couple days after getting home .then the next week I started getting that old time headache-sick feeling. long story short I was taken to the same er .there I was told what I already knew I had relapsed. This stay was tough for a week they kept me knocked out because all I could do was throw up. I finally convinced the dr. to put me back on steroids .He did and by the next evening I was setting up on my own though the dr was upset with me doing this on my own all alone I was past ecstatic. I felt I would be independent again soon. I was released early February. The first month or two I was scared/careful because I knew it is one day at a time with GBS. I still fear GBS some 17 years later. I have problems being real tired, foot drop problems as well as my balance sometimes gets off. I was glad to find a site related to GBS for most people have never heard of this. Making it hard to relate to others how you feel .They seem to think you are just wanting to get out of some thing or your just lazy. wish they could understand. I'm not lazy at all you just don't want to mess with GBS. they said GBS affects people differently. When I asked could I relapse again they said no, but not a whole heartedly no. I now am married and have three beautiful girls and thank GOD daily for his help and my blessings. I hope for those who are sick with GBS the best. feel free to e-mail any time elguthrie@NOSPAMbellsouth.com thank you for letting me share my story. Dwayne Irvin
Ruth's story
My name is Ruth, I'm
43 years old and I'm a GBS survivor too.
When I was 26 months
old my parents, my brother and I were on vacation in south
Argentina. My mom recalls that I said that my legs "hurt". A few
hours later they were non responsive. I couldn't walk or even
stand up.
They rushed me to a
nearby hospital were doctors thought i had polio. My mom kept
saying that was impossible because I had been vaccinated.
She called our pediatrician in Buenos Aires who asked her a
couple of questions and said he thought that was GBS, and that I
needed to be treated right away.
They hired a plane
to take me to Buenos Aires (1000 miles away from the city were
they were, San Carlos de Bariloche). When we arrived to the
airport they were trying to keep me alive giving me mouth to
mouth support.
I was paralyzed from
toes to neck. I could move my head.
In hospital I got
broncopneumonia, so that was even worse, they put me in an
oscillating bed and I needed extra help to breath.
I can tell you from
the pictures the before and after of GBS. I came out of hospital
a different person. My eyes were different. My life changed.
Doctors said that if i was lucky enough to survive I wouldn't
walk ever again. My parents never gave up. They hired a
chiropractor and started my rehab.
I feel lucky and
proud, though I never recovered the strength in some muscles of
my legs(i walk with my tip toes) I was able to practice almost
every sport I wanted, but with a lot of effort. Whatever was
easy and natural for others it wasn't for me.
I asked myself what
would my life had been if I never got GBS. I know that
you're more vulnerable to this kind of illness when for some
reason you lower your defenses. Psychologically speaking you're
vulnerable. This may be for different reasons. Today I can
tell you that because of this life term experience I've learned
to not giving up. Please contact me It's very important.
When I was 4 my
parents moved to San Carlos de Bariloche ( similar to Montana)
where I was in touch with nature and practice all kinds of
winter sports.
Hugs, Ruth
Sandy Doyle's story
I was only 23
when this happened, and that was way back in 1977.It did not
start with my feet or legs as most, but one day I noticed
when I rubbed my fingertips together it felt as though they
were full of gravel. It progressed rapidly. Within 48 hours
or less I was in the ER not being able to use my left side,
hand arm leg and foot. I had a Neurologist do a Spinal Tap
and all he said was I had something in my spinal fluid. I
was a kid then and did not know what he meant. I spent 2
months in the hospital, one time the nurses aid came in and
wheeled me to the shower and she left. I could not stand and
fell and waited for some time until someone found me. Thank
God I was never on the vent. My arm was so bad I felt it
would explode at any moment.
When I was
finally released to go home, friends had to put their arms
around me and as I would move my right foot and leg forward,
they would grab my left one and move it for me. I had a 4
month old baby and he was in good care. I once woke up in a
parking lot of a gas station 50 miles from where I lived,
and did not remember how I got there. I was on 10 mg of
Prednisone a day for months. Therefore for the females out
there, I now have Osteopenia. What a small price to
pay.
I took nearly 18
months to walk and try to control my left hand, although it
is now 2005 I only have large motor control of that hand,
and cannot tell the difference between fabrics. I still have
days when my hand feels as though it has so much pressure it
will explode, and if I extend my arm and hand my fingers
wiggle in all directions even though I try to control it.
The forefinger bends into my palm and the rest wiggle with
no control, I can feel it up to my elbow. I am slightly off
in gait as going downstairs and judgment going through
doorways. I recently fell down 12 stairs and shattered my
shoulder, but what a small price to pay for what I got back
throughout this. If you have had GBS-you may have a few
inconveniences-but LOOK HOW FAR WE HAVE COME. There is a
GREAT life after the illness, how lucky we are. How VERY
fortunate we are to have had this illness and be where we
are now, no matter what. I feel so fortunate!
This page was last modified: July 18, 2006
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