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How Do I Get Drs To Take Me Seriously?

How Do I Get Drs To Take Me Seriously?

I've been to sleep drs., resulting in a Cpap. Neurologists, etc. They won't even discuss narcolepsy because I don't "fall down when I laugh"!! My cousin had narcolepsy (now deceased) so I know how difficult it is to get a diagnosis. What should I do next?! I've been miserable with this since high school (I'm now 70!)

A MyNarcolepsyTeam Member said:

Get referred to a board certified sleep specialist preferably a Nero sleep doc and get a sleep latency test. There are different forms of narcolepsy not everyone falls down or passes out

posted 11 months ago
A MyNarcolepsyTeam Member said:

I have narcolepsy without cataplexy. I'm 57 years old and have struggled most of my life beginning at age 10. For the past 7 years I've seen a regular doctor because behavior health i went to closed down. I couldn't find a mental health doctor for several years and just dealt with what my doctor would help with. I couldn't function very well for these past 7 years because my doctor doesn't know how to treat all the issues I have. In May of last year I started trying to find another doctor and I found a neurophyschitrist, he understands all of the things I go thru and has been an answered prayer. Now I'm back on the treatment plan I was 7 years ago and I feel like I have my life back.

Do you stay sleepy most of the time?

I had a sleep study done years ago and I will refuse every time a doctor ask me to do another one because the medication I take would make the results be a false negative for narcolepsy. If they offer me a lumbar puncture I would do that. I'm not wasting any more of my time on something I know more about and thats the way I feel and what makes my life functional. We suffer enough. More research needs to be done and on a definitive result that a person has narcolepsy with a genetic test or blood test. Narcolepsy is rare or they say it is and more research definitely could help us all. I'm here if you need me my name is Kathy Yarbrough

posted 7 months ago
A MyNarcolepsyTeam Member said:

You need to get referral to a Sleep Clinic for MSLT Test [Multiple Sleep Latency Test] of 4 to 5 daytime naps. I'm 75 now, and I see you! If you have CPAP then you have had a diagnosis of Sleep Apnea. Cataplexy [fall down laughing] is NOT the one and only indicator of Narcolepsy. I agree, find a new Doc!

posted 7 months ago
A MyNarcolepsyTeam Member said:

Keep fighting to have a sleep study. If your doctor is not listening try a new doctor.

posted 9 months ago
A MyNarcolepsyTeam Member said:

Find a sleep specialist that specializes with Narcolepsy. Unfortunately alot of doctors (including alot of sleep specialists) are uneducated about Narcolepsy and don't really now the actual symptoms and the varying degree that people can experience these symptoms. It can be very difficult to determine the correct doctor though since a lot of sleep specialists have a long generic list of specialties listed. If you know anyone around you with Narcolepsy that has a good doctor, that is your best bet.

posted 11 months ago
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