Got Dystonia?

Just a little about my back ground...officially I have been
classified as having Generalized Dystonia, Paroxsysmal Dystonia, and
Myasthenia Gravis Syndrome (which is slightly sifferent than full-
blown Myasthenia Gravis in that I show some symptoms of Myasthenia Gravis and respond to the medication for Myasthenia Gravis but tests have all come back negative but I cannot get off the medication or I will loose the use of my vocal chords - go figure). I got my first Diagnosis of Dystonia in 2000 after I did research and found the info on the internet and took it to my neurologist. He read over it & agreed that was what I had & we began a treatment program. By 2003 we had moved due to my husband changing careers, and I was able to go to more informed neurologists and begin botox treatments. What a wonderful thing!

My symptoms began in 1987 in school. I was sitting there chatting
with my firends waiting for the bell to ring when I felt a tingling
sensation in my legs, got tunnel vision, and turned into a limp
fish. I slid out or my chair like I'd had "one too many" and onto
the floor underneath our desk-row, and my arms and legs began to
curl up in quite weird positions. Well, they called my mom, who
took me to the ER, they didn't even know what to do and ended up
shooting me full of Benedryl & sending me home. It got worse & worse until I was in a wheel chair in the course of just three months. My mother kept wanting to help me eat but I refused & only let her cut my food so I wouldn't fling it across the room or have too sharp an object in my hand!

About six months later doctor afer doctor, test after test, & loads
of Artaine, and things settled down. I could , walk, write, & each
on my own again. Soon, I was able to taper off the meds but still
didn't have a Diagnosis. My neurologist at the time (who thought he was God's gift to medicine), dropped his hands & gave up one me after all known test came back negative & sent me to a shrink, who said I
didn't fit the profile for someone who would invent an illlness -
DUH!

I went for 15 yeas thinking all the muslce tightness was "stress"
and took stress management courses, seminars, anything to help - it
did some but didn't toatlly. If I had an episode I would load up on
benedryl and go to bed. Some episodes, would last for a few hours,
some a few days, and every once in a while I'd get one that would
last a month or more.

I knew I wasn't crazy and I knew something wasn't right but I didn't
have a NAME! I was so glad to get one -15 years is a long time, but I am glad it was not longer!

At the beginning of this year I began to have trouble, talking,
swallowing, and had the disticnt feeling of someone walking around
with their hand over my throat. I have been in & out of the the
hospital every month from Jan-April getting that all settled. Then
in July, I had to have my appendix out. I am truly tired of docs &
hospitals! (Though I highly respect all my docs, speech therapist, physical therapist, chiropractor, & surgeon. They are all GOOD people!)

When I got to the point that I could speak, eat, and talk again in
April. I became determined that I would work in whatever way I
could to help other with Dystoina. I truly felt that was what I
was "supposed" to do.

I am involved with things on a local and a web level and will
continue to do so. I have been able to do a few talks for different
groups and am trying to raise awareness as much as I can.