JanaDaisy Posted May 22, 2013 Report Share Posted May 22, 2013 Has anyone else been diagnosed with narcolepsy? I have POTS/NCS, Ehlers-Danlos. Last time I went to Dr Grubbs office, they recommended I see a pulmonologist because I was having shortness of breath, but my PCP would only give me a referral to a sleep dr because he thought my problems were anxiety, because "POTS is more of a psychological disorder". (Clearly I need a new PCP). However, the sleep dr seemed very knowledgeable about POTS and a sleep study and MSLT diagnosed Narcolepsy. The sleep dr thinks there may be cataplexy involved, but I think it may just be POTS... Is there anyone else that has been diagnosed with POTS and narcolepsy?!? Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 22, 2013 Report Share Posted May 22, 2013 I'm a nurse and developed an assessment form for pediatrics years ago that included it, so that if anyone had it at night, the nurses would be alerted to it. My son has it Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 22, 2013 Report Share Posted May 22, 2013 I am diagnosed with hypersomnia. The tests were inconclusive for narcolepsy in my case. I don't believe I have cataplexy. I haven't, seen a lot of chatter on this forum about it but there are lots of people in the Inspire forum at www.ednf.org that have hypersomnia and/or narcolepsy diagnoses. If you don't get a lot of response here, you may want to check out that forum. Quote Link to comment Share on other sites More sharing options...
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