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I live in northern ontario, Canada. I only recently found out my brain injury
was caused by Encephalitis. I am still trying to find the main cause for
my brain swelling. I am 4 years post injury.
I started with problems in January 2000. I was referred to a
recently new doctor in this town who was a Internist. He referred me to
this new doctor who he said would be up to date on how to deal with this.
I grew sicker and weaker with the doctor stating to my next of kin that
he did not have a clue how to help me. I started to suffer extreme nausea,
vertigo, agitation, waking up one morning not able to talk that the words
would make sense, they called it disjoined sentences at the local hospital
leaving with a psychiatrist. The physiatrist took my temperature only upon
my insistence or I was not going to talk to him and found it to be 104.
This was in March 2000. I was immediately rushed back down to the emergency
ward where I was reassessed. They insisted I take some medication which
I tried to explain that I had already had enough tylenol to sink a ship.
I was told I was uncooperative and they insisted so I took what was given.
I threw up for hours.
My temperature came down and I was sent home. I was not talking
right, was unsteady on my feet, walked into walls as I had no
judge of things and felt extreme weekness, severe nausea and
a headache which caused my eyes to water uncontrolled, a severe
sensitive to light and noise. My neighbor and mother and daughter
were left to deal with me. At that time I started with seizures.
The Internist explained again he did not know what to do except
medicate me with seizure med's. until I could hardly function.
My mother ,best friend and daughter were my nurses. I kept going
to the local ER until I finally got help from a G. P. who knew
me before. I was talking like I was, as week as I was, and again
as fevered as I was, he knew there was something severely wrong.
I had a cat scan which showed double pneumonia, severe sinus
infection and some brain swelling. I was put in the hospital
for 24 hour observation.
I was put in a room and they shut the door at night. My
neighbor stayed for hours. I woke up and the sun was up, a
note on my shirt from my neighbor saying she had to go sleep
and what time she left. No one checked me for 4 hours. I decided
I was safer at home and my mom could take care of me better.
She called me silly and I lost my cool. I pulled out the I.V.
the blood flew which I stopped as I knew how to stop it. I
signed a paper and went home. I slept I was told 32 hours
when I got home.
I suffered many months with severe health problems. I argued
with the internist and insisted on some help or a referral
to a dr in another city. A Year later, I had an MRI which
showed I still had a swollen right side of my brain. I asked
to be tested for West Nile and was told it was impossible
and they were not doing that. I got a new G. P., I was told
that was impossible to do in this town. He has helped but
had unfortunately has not much to go on as my medical file
was destroyed in a fire. The Doctor said he cannot just believe
my mother and me, he needs paper to work with. I am building
a new file and retrieving what tests I can.
In 2003 my new G. P. refereed me to an epilepsy specialist
who confirmed I do not have seizures, that I have a brain
injury. The specialist only told me a suspicion of E but would
not put the pen to the paper. I have retired my nursing staff
which includes my mother, my neighbor and my now 10 year old
daughter who is in counseling to help her become a child again.
I am going to make it up to her. She recently told her best
friend that her mom is not sick any more. I am so pleased
to hear such wonderful words as the counseling is giving back
to her something I had no right to impose on her.
I will never give up on trying to get better. I will do what
ever it takes to fix the problems I have. ("the deficits").
My new doctor trys to understand but I some how think he has
a hard time with this. I share what I know to help others. Blood
tests, cat scan and MRI's are good info for future use and can
be compared to new tests. Please share all experiences to help
others.
Yours sincerely,
Dianne
Canada

Posted: Jan. 14,2006
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