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What having cmt has meant to me

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i was diagnosed at age 27 w/cmt. i, being so young, asked my dr. if i could

possibly have arthritis because i could no longer open the plastic clothespins i

used to hand out my sheets to dry every week. he took a loøk and said it was not

arthritis, but he did want me to go and see a local neurølogist, who after hrs.

of grueling emg's decided i had cmt.

my docs wanted me to go to uva to be seen by the director of neurology and

spend a few days in the hospital for more testing. in the meantime, we had two

young babies at home. we asked friends to come and stay w/them as we took the

two hr. drive to uva. i was seen right away by the dir. who never examned me,

jusy looked at my youthful hands and said he had the real diagnosis. in the

meantime he had told my husband what i had, and i would be looked at for lou

gehrig's disease (als). i saw 3 residents and by then had been told about my

life expextancy and the one thing i truly remember to this day is that i wanted

to run away! there were bars on the window and after settling down i realized

i'd be taking this frickin body with me. i knew i would not live love enough to

see my girls enter schoøl and that i would not be there to tuck them in, or

pierce their ears or be able to take them to dance classes. oh how sad and mad

i was!

you see, i still could walk on my heels, i was a dancing beach music, arthur

murray maniac! the nurses got my husband and i through the first night, by

bringing us books on als. they told us to keep praying because they had never

seen anyone like me w/als.

the next day, i was sent to another bonified doc who was to do another emg, whc

the directør never checked from my earlier tests, which had been sent on to him.

He asked if I knew what I had and I told him ALS. his response was, " who the

hell told you that? " He said i had a benign disease called cmt. i told him i

would take it! It has not been 30 yrs. since that diagnosis, but I thank God

every day for my life, my wonderful, husband, loving daughters and terrific

grandchildren.

I have had a wonderful life and have accomplished many things in my life, but I

know I have a lot of living to do! The one thing i miss is dancing! Know what?

in my dreams i'm a great dancer!

God Bless!

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