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Other Conditions With Narcolepsy

A MyNarcolepsyTeam Member asked a question 💭
Pawnee, OK

I have two rare conditions narcolepsy with cataplexy, of course, and about a year ago I found out I had an Eagle Syndrome. I had surgery for that about six months ago, so yeah Iand about a year ago I found out I had an Eagle Syndrome. I had surgery for that about six months ago, so yeah, I would like to know conditions that anyone has with narcolepsy I still can’t believe that I have two rare conditions. How does this even happen?

July 24
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A MyNarcolepsyTeam Member

I have narcolepsy as well as mosaic Turner's syndrome. Turner's alone isn't common so being mosaic is very rare. I also have Sjogrens disease, epilepsy, extreme Raynaud's, Fibro, hypothyroidism, degenerative disc disease/arthritis, blood clotting disorders, and apnea...which are pretty common, just maybe not all together. I'm only 42. Who knows why some of us are lucky enough to such rareness 🤬😭

August 20
A MyNarcolepsyTeam Member

It’s just crazy to me to be this rare lol 2 rare conditions like I always say to my siblings there is 4 of us I’m the one who gets 2 rare conditions that are kinda hard to explain and understand
my siblings didn’t get any of this..
I just joke I would never want to see my siblings have to deal with something like me it would be so sad for me.. so in a way I think of it is this it happened to me for a reason and I can probably handle it better than most my siblings. I’m thankful it was me about them and I’m truthful about that. I talked to my brothers every day and we’ve been a very close family in my whole life. It makes me sad to see them. Be sad about me when I go into cataplexy..

August 10
A MyNarcolepsyTeam Member

I've got POTS as well as type 2 narcolepsy. And ADHD, but that's not rare lol

August 10
A MyNarcolepsyTeam Member

Keep ya head up

July 26

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