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Re: re: another possibility
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I'm 33- and while the people I've spoken to at Hopkins over the past few days agree that my symptoms sound like narcolepsy (one doc even went so far as to suggest that I sound like a "textbook" case), I won't have that confirmed until my sleep study in December. And, they didn't find it, I found y'all, then I looked up everything I could find on narcolepsy and cataplexy (and was so incredibly relieved to finally find something that actually made my symptoms make sense), and then I found the sleep center at Hopkins. The doctors there are all board certified sleep specialists as well as neuro or pulmonary specialists. Right now, I guess I'm self-diagnosed because the more I read and talk to you, the more convinced that I am.
I'm also very lucky in that my mother has been 100% supportive and got very angry when the old docs suggested somotaform (I never spell that correctly!). She's been researching as many illnesses as I have trying to find an answer. My sisters, friends and other family members- including and especially the aunt in whose basement I reside- wrote me off as lazy, etc. after the first six months. I don't expect them to 'get' this either.
My symptoms started suddenly- at least the ones I noticed- when I was 31; but I've always been what my mom calls a "late bloomer." I wonder if a drastic change in my schedule, from working nights as a bartender (four days a week, 9 hours a day) to going full time in the nursery starting at 6am and working at least 10 hours all hard physical labor), triggered the onset.
I have a ton of questions about living with this and having some semblance of a normal life, I appreciate all of your advice and support so far. I guess I need to apply for some kind of assistance- the evaluation and sleep study are pretty expensive and then there'll be meds. I'm hoping to get it controlled enough to go back to work (and to the gym, if they can fix the episodes so I'm not afraid of falling off the treadmill.) I know some of you have children, is there any worry about passing narcolepsy on?
Thank you again for all of your kindnesses, it feels a lot less lonely.
~Juliet