Hello Katri. Welcome to DS.

My eldest son was dx'ed with Narcolepsy in 1998 at age 18. I have enough narcolepsy symptoms that I nearly took the SLT, myself but decided against it because the available treatments were so similar to the Bipolar treatments I was already receiving. At that time, BP was the number one misdiagnosis for Narcolepsy. I'm willing to bet dollars to wishes that it still is.

The void of Narcolepsy support/knowledge is downright depressing. Nobody seems to want to talk about ^it^. My son has made his narcolepsy the center of his universe while refusing to look beyond the four corners of his lonely bed. I still haven't taken the SLT. If I am right about being narcoleptic myself, I'll still take the active BP treatment over rolling over and dropping out of life.

Sure wish I had something other than frustration to share with you on the Narcolepsy score. but. . . What a long, strange and silent trip it's been.

On the DS score, this particular forum is slower than snail mail, but it is a BIG site with lots of other forums and support to offer. I hope you will take the time to surf around and see where you might fit in.

Welcome aboard.

Hi Arfie, Thankyou for responding. It's so sad to hear how Narcolepsy has taken over your sons life. I am sorry to hear that. I was diagnosed in 1989 and have had to battle on since. It is the type of condition that can take a hold of you especially with interfering in everyday activity. I have a severe case according to the specialist I see and would say I have known my motivators which have spurred me on. It is a very lonely condition and in the UK the unfortunate thing for me is that I am unable to access the medication that would give me some quality of life. It's a case of post code lottery and my age goes against me. If I was a teenager I would automatically be eligible for it.This is frustrating after working all my life and studying you name it and basically dragging myself through to achieve. I wastnt aware of misdiagnosis of bipolar. Bipolar is enough to contend with without Narcolepsy too. I will continue on my quest to find support.
Thankyou for sharing and so hope your son takes that step to improve his quality of life. All the best.

As of my release from formal psychotherapy around 2K, my primary dx was PTSD. There was debate about whether to declare the bipolar an official misdiagnosis, but I didn't see the point. I got allot of effective coping tools, etc., from my BP therapy and didn't want to invalidate that progress.

My gut feeling is that Narcolepsy runs through my criminally dysfunctional family line like a runaway train. Yes, those criminal dysfunctions are the source of my PTSD.

In 1998, when my son was diagnosed, Stanford University was running an investigation looking for genetic markers. I wanted to challenge the "criminally dysfunctional" barriers to get my family in on the study. We had 5 generations of DNA we could have submitted. It seemed worth the risk.

My son went ballistic. He was 18 and a legal adult, so I backed off and haven't pursued it since, beyond keeping my radar going for on-going developments. Stanford remains an active program.

My son is 38 now and ? ? ? Ouchies for all, even the GKs attempting to understand the scary and mysterious "Funny Uncle."