Posted by baobabble on July 02, 2008 at 18:38:16:In Reply to: Misdiagnosis of Narcolepsy? posted by couldthisbe on July 02, 2008 at 08:06:32:
I'm new to all of this also. I was diagnosed with N a little more than a year ago and it has been very difficult for me to accept the diagnosis for various reasons. But when I consider the facts it seems like accurate. One thing to consider is how the diagnosis was made. The clinically accepted method is to have a polysomnogram, where they hook you up to all the wires while you sleep at night. This is done to help rule out other sleep disorders and to observe the pattern of the sleep cycle. Narcoleptics tend to have a deficient amount of stage 3 and 4 sleep. Then the next day there would an MSLT. This consists of several 20 minute naps spaced two hours apart. The logic here is that because narcoleptics fall asleep and transition into REM sleep within 20 minutes.
If these tests have been done and evaluated by a competent sleep specialist it's a good bet (from my understanding) that your relative does have narcolepsy. Please remember that the symptoms present themselves in different ways for each person. My own "sleep attacks" are not obviously apparent to an observer. This is one of the reasons why diagnosis is so difficult. Personally about 20 years lapsed from the time I first experienced symptoms until the time I was diagnosed. I had tried to explain it to several Doctors and it was always dismissed. I cannot tell you how frustrating this was. And when my Dr first suggested that I might have it, I thought she was crazy because my symptoms did not fit into the stereotype that I had for it. I can tell you that it doesn't seem like anyone I have told about it believes me and this is also very frustrating. It makes me feel very alone.
I can't say whether or not your relative has it but I can tell you that it is very frustrating to go it alone. I suggest finding out if the appropriate clinical tests have been done. If they haven't encourage your relative to have them done. Finances should not be an issue. In my case the Florida Department of Vocational Rehabilitation paid for the tests. If the tests have been done I would suggest encouraging her to seek out medical treatment. I have been taking a med called Provigil. And while it doesn't help everyone, it has helped me with my daily alertness - no more sleep attacks. But there may still be other issues that need to be addressed in therapy or with other meds (i.e., depression, anxiety). It is an expensive med but there are organizations that will help with getting the meds. For example, the National Organization for Rare Diseases (NORD) has provided me with meds for the last year. Also, I suggest checking out the National Institutes of Health website for more information. And Stanford University has a clinic devoted to narcolepsy research and provides accurate information as well.
Keep in mind that this is a serious disorder and can be debilitating for various reasons. If she has narcolepsy it can be very damaging emotionally and socially. If she has narcolepsy she is not lazy, she is tired.
For more on my personal experience, check out my post entitled 'Feeling Desperate'.
hope this helps.