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I -AM -NOT -INSIGNIFICANT !!!!!!!


Posted by Betty Anne on March 20, 2000 at 12:17:09:

The assumption that if you do not have a positive result from your blood test means you can dismiss the possibility of narcolepsy is SO WRONG!
I am one of those 2% narcoleptics. So is my mother, both of my children, three brothers, a niece and a nephew. The clinical diagnosis should be the prime tool for diagnosis. The sleep study comes next and then, mainly for research purposes, the blood test.
A doctor at the narcolepsy conference in Minn. said that he does the blood test and if it is negative, he quickly dismisses the possibility of narcolepsy as the number was insignificant.
I TOLD HIM I DID NOT CONSIDER MYSELF TO BE INSIGNIFICANT!
When I said 9 out of 10 members in my family who have been tested had narcolepsy but not the marker, he insinuated that we were not properly tested. I told him who my specialist is and his reply was "if it is true, then your family should lend itself to research". (Again, the disbelief on his part) I then said our family was being studied by Dr. Mignot at Stanford (where, by the way, I will be going shortly for the spinal fluid study) and he just turned away from me. What could he say?
I suffer from every symptom of narcolepsy. I have seriously considered suicide due to the lack of understanding by some of my former physicians.
I find it reprehensible that a fellow narcoleptic would consider denying diagnosis and treatment to another narcoleptic simply because they are only one of the 2%.
It is very probable that through this 'insignificant' 2% the discovery of the exact cause and hopefully an effective treatment will be found.
Please keep in mind, a narcoleptic is a narcoleptic. Each one of us experience varying symptoms to varying degrees.
DONT' DENY A FELLOW SUFFERER DIAGNOSIS, TREATMENT AND SUPPORT BECAUSE OF A NEGATIVE BLOOD TEST!
THIS IS A PERSONS LIFE YOU ARE DISMISSING!

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