I do not know anyone else with cataplexy, but have suspisions that a few of my acquaintances are undiagnosed narcs.

Certainly applys! hav'nt met a soul in person with N&C, not even at the hospital!

Annie

Me neither - the only ones I know are through this forum which is a God send.

I know that there are two other people in my town that have N. When I had to give up my job last year through N a lot of people asked me why I wasn't working anymore. When I told them two people said that their friend had to give up work for the same reason. I gave one person loads of information/websites/support groups and my phone number for her friend to contact me. But no response. I have talked to several people through support groups (N websites)over the phone and found it really refreshing not to have to apologise for yarwning or needing to sleep. Comparing histories etc was really good aswel.

Anyone one in Califorina with cataplexy. Centeral valley.

Same with me, I know no one with Narc. I do know several people with OSA but thats as far as that goes, and becuase CPAP works so well for those with just SA they cant really relate to what I am dealing with anyhow.

If it wernt for everyone here and on the yahoo Narc group Im part of I dont know what I would do. I dont care where you all are, I just need to know Im not alone, you know?

well. judging by the fact that getting my prescription filled every month is like trying to draw blood from a stone.i am guessing that it is fairly unheard of in my area!!
i have met some people at hospital, being tested for narc. but that was pre-diagnosis, so not sure if they have it or not! but i wld love to meet someon like me, who has narc and cata..... it would be good to be with someone who understands it all.....but we may need a carer with us.. lol x

Never met in person another Narc. Would love to though. Just sit down and compare symtoms, and even better, they may be doing something or taking something that helps those dam symptoms that I don't know about.

I have only met one person who has it and we didnt stay in touch, it was me and my grandma were out at dinner and i was talking to her about narcolepsy and then a lady came up and was like which one of you has narcolepsy? I told her it was me and she was like oh my mom has narcolepsy and her mom was sitting with her, and we all joined one table and talked for like an hour but after that i never heard from them again

yes, i met one of my ds friends and we stay in contact on the phone and we visit each other. she is a realy nice lady and has helped me get over alot of the rough spots.

I know a family that has 3 children (grown) with narcolepsy. None of them have cataplexy though, and have very mild narcolepsy. They do not seem at all like me, and do not understand my level of disability. Kind of frustrating. They were diagnosed as pre teens, and have a rather long family history of Narcolepsy. They knew how to deal with it, and just act like it is no big deal. I am different from them. I have a brother who has mild cataplexy, and I asked my Dr. about this. He said it is not uncommon for siblings of persons with narcolepsy to develop some of the symptoms. Who knows. Without this community, I would still feel like I am a hypochondriac alien, and that no one could possibly understand what happens to me and how I feel. Kudos to all my fellow narcos!! Naps all around!! (just kidding)

I've never met anyone else, in person,with this narcolepsy.
Not even at my doctors office.

only kinda here too

i have a sister and an aunt who, like me, are diagnosed with N w/o C, i have a cousin displaying classic symptoms of N who is trying to get her GP to refer her for sleep tests. So far he has said she absolutely doesn't have it because she doesn't fall down on the spot, he basically read this in his book while she was there in his surgery. She has told him N is in the family, I have told her next time she goes to tell him that only 2/3 people with N also have C. I do believe there's several more, including at least 1 or both of my sons, and my dad, who also have N.

I knew one other person with N, unfortunaly she passed away last year at the young age of 25. I met her at church when she was a teen, and although I knew she had some problems it was a couple of years before I overheard about her N. She lived with her grandparents as a child and teenager,and I don't think it was talked about much. She died in a car accident on a rainy night which she was at fault. She was a newly wed, and had her whole life ahead of her, I have a suspicion she dosed off or was on AB and didn't even notice the car she pulled in front of. As far as this group goes it has saved my sanity, but I don't know if we all would really like each other if we met in person , because after all we mostly just have this disease in common! Oh well just a thought
Cheri

I also have not met anyone diagnosed with Narcolepsy in person. I do have suspicion of a few family members who might have it, but they haven't looked into it since I told them about it. I only got my correct dx this last Dec. after 19 or so years of misdiagnosis. Sadly, I think at least one and possibly both of my children have it. They're 10 & 7 years old. I'm taking them at the end of the month to a pediatric neuro who specializes in Narcolepsy.

This site has been a godsend for me. It helps to see that much of what I go through, is "normal" for others as well.