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Dear group:
I have been a somewhat silent member of this forum for several months
now with my goal being to gather any information on tm for three members
of my family who are currently suffering with the illness. As some of
you know, my family seems to be the only one so far to have more than
one family member stricken. The following article was written by my
cousin who's father was the first to be diagnosed. Any input would be
greatly appreciated.
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Transverse Myelitis in families
This article submitted by Ange Melick on 1/5/97.
Author's Email: tamnang(AT)alltel.net
I have done extensive research and read numerous articles and descriptions
regarding Acute Transverse Myelitis. There is one thing that I have NOT seen
however...something which seems to be unique to my family - not only is my
father suffering from this rare and seemingly unexplainable disorder but
also TWO and possibly THREE of my paternal aunts...my father's sisters.
My father was struck with this illness, exhibiting his first flu-like
symptoms in the summer of 1993. Now I have a VERY large family and unusual
illnesses seem to be our forte but we also seem to have a collective knack
of overcoming these problems. (At the age of 19, one of my aunts was sent
home to die of Lupus. She recovered and, much to the amazement of her
doctors, went on to have 5 children - although she was told she would never
be able to have children.)
By September of 1993 my father was totally incapacitated and eventually
hospitalized, coming very close to undergoing surgery for what was thought
to be a malignant tumor. He was unable to walk and had limited mobility.
Before this attack, my father was an extremely active, hard working man who
enjoyed working with his hands...a real do-it-yourself person. To add to his
frustration, he was also the general manager of a busy electrical
contracting business and felt he was becoming unable to perform his job
duties.
In October, my younger sister was married...my father was barely able to
walk her down the aisle - the father daugther dance was sadly out of the
question. Still, he kept a "stiff upper lip" and maintained his dignity,
composure and most of all his sense of humor.
During the next 9 to 12 months, he was seen by various doctors, had gone
through a plethora of different medications and treatments for the constant
pain he was in (at one point, I was unable to even hug him because it caused
him too much pain) and still there was no real advance, no straight answers
and, worst of all, a very uncertain prognosis for the future...would it get
better or would he have to endure this for the rest of his life?
Then in late 1994, his younger sister began exhibiting similar symptoms
which signified the outset of the disease. Being an RN, she immediately went
to the Ohio State University Medical Center and consulted physicians and
specialists there. She went through the same battery of tests and was told
pretty much the same thing. One of the doctors was intrigued, however, when
she told him that her brother was suffering from the same malady. Still,
nothing has come of any of this and it is now 3 and a half years since my
father became sick. About a year ago, another of my father's sisters became
ill. She was diagnosed, however, with Lupus (it runs in our family). Within
3 months, the diagnosis was changed to acute transverse myelitis.
I have searched for answers and found none. This in itself is frustrating by
I am also afraid. If this disorder IS somehow familial, what about future
generations of our family? Will I, my brothers and sisters or our cousins be
struck down with this disease? What about our children? And one final
question...this may seem completely off the wall but could this disorder be
IN ANY WAY related to preventative polio shots received by my father and
aunts as small children? Perhaps I am grasping at straws there but stranger
things have been linked to rare diseases...
Any feedback or input would be greatly appreciated.
Ange Melick
tamnang(AT)alltel.net
135 Riverview Drive
Newark, OH 43055
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* Could it be MS (1/7/97) 10:57 PM
* Fellow patient (1/7/97) 12:28 PM
* Fellow patient (1/7/97) 12:19 PM
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