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This story is a Text Book of Medicine, you read this & you will
be the best doctor
Hi Folks...
Way back in 1972, when I was just 18 years old, I was the epitome of
health. Never got sick, ate the right stuff... and gymnastics reined
supreme. I worked for a major insurance company and was digging life
in general. On February 4, 1972, the company made it mandatory that
ALL employees (over 300 of us) were to report when called
(department-by-department) to a station on the 1st floor... and get
a flu shot. EVERYONE had to get one.
My symptoms began with having the flu. I dragged my
maid-of-honor-self down the aisle the following day in my sister's
wedding. By Monday morning, I was fine... but throughout the month
of February 1972, that same flu would come and go, come and go.
Emergency room visits proved futile. "Oh, you have the viral flu...
and you're a little anemic. Take a couple of days off work and
rest." The next visit: "You have mononeucliosis." 3rd time: "The
X-ray revealed that you have no brain tumor, so it has to be mono."
And by the 4th visit in mid-March, my toes were numb... and the left
side of my face was partially paralyzed, "If you'd just tell us
where you were hit in the fight, we might could be able to help you!
If not... here's the name of a neurologist...."
Shortly thereafter, I couldn't handle the flourescent lights in the
office and had to wear my sunglasses. My boss called me into his
office on a Friday and asked to see my arms. He wanted to know if I
was taking drugs! "Christine's gotta be on drugs..." was the office
buzz. By Monday, I was couch-ridden and my vision was going double.
I called out of work. I did the same thing on Tuesday... and
received a Western Union telegram: "Due to excessive absenteeism,
your employment with the XXXXX Insurance Companies of America has
been terminated." And along with the termination went my group
health insurance. I then collapsed over the coffee table and my
father had to carry me to the car and into our family doc's office.
"I cannot diagnose this in my office." he told me, and then
proceeded to call HIS hospital and I heard him say, "I'm sending a
patient via car to Emergency."
Back in 1972, GBS was rare... and there was NO treatments available
at all. None of the goodies that alleviate progression of the
disease. Zilch. None of the resident doctors could diagnose me...
but a neurosurgeon could and did. He did a lumbar to finalize the
diagnosis... Guillain Barre Syndrome. Intensive care became the site
of my own personal battle ground. Before it was all over in there, I
went totally paralyzed, watched a sweet Italian woman die looking
directly into my eyes while she passed on... and I swore I wasn't
going with her so I missed a trache by the skin of my teeth by sheer
willpower that my lungs would be spared. They were, but barely.
I lost count on how many lumbar punctures were performed. I couldn't
feel them anyways... and I couldn't feel the EEG's or whatever else
they did because all I could do was move my head back-and-forth
along with my eyes. I couldn't feed myself. My older sister sat with
me all day and spoon-fed me until the paralysis began receding and
movement began rising out of the ashes.
March 27, 1972 is when I entered the hospital... May 20,1972 is when
I was released, in a wheelchair- still unable to walk. What used to
weigh 125 lbs going in... now weighed 96 lbs going out.
The Guillain Barre Syndrome strikes only once. It does not return.
It is not "chronic" and never will be. It does, however, leave you
with residual problems in some cases, depending on the intensity of
each individual case.
Because the first to go, is the last to return.
In my case, 31 years post GBS? My toes cramp and my feet ache...
and... I'm 2-faced. One side works, and the other side doesn't.
GBS triggered a genetic autoimmune disorder. Neurofibromatosis. The
kind "minus" cafe au'lait spots and skin tumors. They do not exist
in my case.
The only nerve in my body that is "read" by my Schwann Cells as
being "damaged" is my 7th CN. I've been overrun for 25 years by
schwannoma and neurofibroma. In 1999, I had a massive craniotomy.
They removed the left side of my forehead and temple and excised
tumor after tumor from the floor of my orbit and optic nerve, plus
networks of them from my left temporal lobe. 12 hours worth of
surgery involving 2 arenas of medicine. Six months after the cranie,
I had stereotactic radiosurgery targeting the one growing in my
cavernous sinus. Just recently, my oculo-plasty opthalmologist
removed two neurofibroma from the same orbit. One from the roof that
was pushing my eye down... and one from the floor that was pushing
my eye forward. Bulging eyes look horrific, but not anymore.
I have the two best specialists in this part of our country working
diligently to keep me alive and well. I have one more surgery to go,
and that is to reconstruct my eyelid.
All from a single flu shot... that triggered GBS in a healthy, 18
year old gymnast. I watched Olga Corbett pull off that spectacular
back-layout/hand-spring on the uneven bars parked in my wheelchair
in front of the television set.
Avoid all flu shots. I mean that with all my heart. You CIDP people!
No no no! If you have taken them regularly, please stop. Think back
on your episodes and try to remember if you had taken any. I hope
not... but if you did, you may have found the trigger.
Take Care,
www.cidpusa.org
www.cidpusa.org/P/ivig.htm
http://www.cidpusa.org/disease.html
http://www.cidpusa.org/Lahore.html
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