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Hello to All!


Posted by Betty Anne on March 19, 2000 at 11:34:58:

I am new to this forum an would like to introduce myself. My name is Betty Anne and I have narcolepsy. My mother, both my children and several other family members also have narcolepsy. We are in the research study being done by Dr. Mignot at Stanford. None of us have the marker so commonly referred to as being used as a diagnostic tool.
I was diagnosed in 1973 but never saw any printed literature until 1992, when I saw the first sleep specialist since my initial diagnosis.
I live in Ontario, Canada and the information I received was put out by Sleep/Wake Disorders Canada, which is a non-profit organization with chapters and support groups in various locations across Canada. (For those of you in Canada who would like information, you can call 1-800-387-9253) or you can visit the web page at www.geocities.com/~sleep/wake
I mention this because in browsing through the other forums, a few stated that they were in Canada and did not know about any support groups etc.
As a result of the negative effects experienced by myself and my family, I have strived to promote more public awareness of sleep and its disorders. For the first time in my life (I am 50) I feel that I have been contributing something worthwhile to society.
I have a hard time understanding why, with what is known, there are still doctors using the blood test to diagnose narcolepsy. Even worse, using the results to dismiss the possibility of narcolepsy if they are negative. A speaker in Minn. referred to those without it as insignificant due to the small percentage. I got up and said I did not consider myself to be insignificant, nor were my children or other family members. (I am a classic narcoleptic in that I experience all the symptoms.) I was reading through the professional forum and was surprised (or maybe not!) to see another doctor state the same thing. How terribly unfortunate for his patients!
Enough of that (it is obviously a sore point with me) because I don't want to bore anyone.
Thankyou to all for being there. I have learned more about narcolepsy and myself through sharing with others than I could possibly learn through any other means.

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