NEED HELP: I have MYASTHENIA GRAVIS...
vgrajeda at hotmail.com
vgrajeda at hotmail.com
Thu Jun 4 21:55:50 EST 1998
Hi, my name is Odette Gittins, I live in Morelia, Mexico, I´m 26 years old,
of two girls, one has three years old and the other one is two years old, I
have two years and
two months with MYASTHENIA GRAVIS, it started about a month after my second
daughter was born,
I began to feel tired almost all day, also my eyelids began to fall down, I
couldn´t watch T.V. and started to feel weak, then OK again in cycles.
On June 10/96, I went to see a specialist that eventually sent me to another
doctor, He did a
test to measure the strenght of my right and left hand, and my whole body.
The diagnosis: Myasthenia Gravis the doctors told me that I had a big
probability to cure my
sickness, because it was a "recent" one, They tought that by making me a
timectomy, I would find
some health, otherwise I wouldn´t get better.
I decided to go on with the timectomy, but the timo that the doctors took out
from me was
bigger than it should be, thankfully, I came out from the timectomy fine and
there was no need
to get into intense therapy.
After that, doctors started to give me Prednisone (150 mg. in the morning) and
120 mg. doses every four hours).
In November 12/96 I was taking Pridostigmine in 30 mg one day, and the
I had to take the same thing, but in 10 mg; also, in the morning, I had to
take one tablet of
Pridostigmine in 180 mg, also I had to take another tablet at mid-day and
another at night in 60
In this way, the doctor started to give me Prednisone every month, and I
Pridostigmine every four hours every time I started to feel weak and talking
After that, I stayed for a year feeling almost Ok, and I could stay fine
without the Prednisone
Then, I started to loose weight, and my health was fine; but on Sept 3/97, I
got sick of my
throat, I got fever, and started to feel like I couldn´t breathe, and I ended
in the hospital,
and I stayed there for three days.
I continued taking Prologstimin only, and I stayed in observation.
Then, sometimes I could feel a little better, but then I was falling down the
On Feb 20/98, I got sick of my throat again, then I got better, but started to
feel a little
tired. Then, I went back to the hospital, and stayed there for four days, and
Pridostigmine in 180 mg only every three hours day and night.
On April 3, 98 I got very sick, like never before, I wouldn´t walk, talk, eat
or even dress
myself, and then one day I was taking my pills, and couldn´t pass water, and
finished in the
hospital almost dying, because of a respiratory problem.
May 27th., again at the hospital for 9 days, with another respiratory problem,
problems), the doctors gave me human inmonuglobulin, in doses of: 12 times 6
gr and 3 times
3 gr .
Right now, I´m taking Prednisone in 125 mg every day, also Pridostigmine in
150 mg every three
hours and Azathioprine in 125 mg. doses every day. This last time, I stayed in
the hospital for
about 15 days, the first 10 days were very hard for me because I couldn´t pass
my own saliva,
also I couldn´t eat, that´s why doctors had to put a sonda on me. Right now,
it´s June 5 1998,
and I feel better, but not fully restablished, I´m desperated, that´s why I´m
writing to all of
you, right now with all that medicine that I´m taking, I sometimes feel well,
sometimes I can´t
walk or even eat.
My questions are:
1.- somebody told me about Human Immunoglobulin therapy, and I want to know if
it´s a good option
2.- if you know about another newer medicine or treatment for these kind of
sickness, or if you
know about a doctor or specialist in the U.S. (or anywhere in the World) that
I could see or talk
3.- when I get mad or nervous, I start talking weird, I´d like to know if
these kind reactions
are normal because of my sickness, or it´s a matter of my nervousism.
Please, I´m asking for help to all of you who have time to read these kind of
letters, I don´t
want to die, I have two daughters, and both need me, and I want to see them
arcacel at hotmail.com
casipan at zeus.ccu.umich.mx
PS: I have full medical insurance.
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