Narcolepsy and Hypersomnia

[scootermom]

I have a genetics dx of Narcolepsy, I do not have cataplexy. My MSLTs say I have Idiopathic Hypersomnia. The genetic panel says positive for HLA-DR2, DR7 and HLA DQ1, and DQ2. It also says that hypersomnolence does not have a genetic association.
During my MSLT, my sleep latency naps were 2, 1.1, 3.1, and 3.1. During the 2nd nap, (<1) I didn't think I feel asleep because I was thinking about falling asleep, The test said no REM in any naps.

Do I have narcolepsy or hypersomnia?

[Jordanna Joaquina, MS, CGC]

Sometimes, it can be difficult to accurately diagnosis a condition when all the pieces of the puzzle do not fit quite right and symptoms overlap. Over time, diagnoses sometimes change when additional evidence or symptoms appear. Regarding genetic testing for narcolepsy, positive test results indicate a susceptibility to narcolepsy but do not definatively diagnose narcolepsy. Positive genetic tests results are used to support a clinical diagnosis of narcolepsy.

We recommend that you speak with your doctor regarding your symptoms and test results as well as to discuss the most appropriate course of treatment for your specific situation. We wish you the best.

[enchanted_me]

I am having the same issue; I am having symptoms of Narcolepsy though haven't had the genetic test preformed. My daugher is seeing things as well at this point and I find it so incredibly frustrating! I feel asleep while driving on monday and went back into the sleep clinic today. They switched my meds from provigil to nuvigil - I am praying it helps.

How did you go about doing the blood/genetic testing?

[scootermom]

My neurologist ordered the genetics test, just a blood test, although now I'm finding that it isn't the only proof. I've had a spinal tap testing for MS, which was messed up, but I hear that that is another way to find out. If I go ahead with the tap again, which is horrible, I will have them test for everything possible. My neurologist just wrote me off saying she can't help me, and made an appt. with a Neuropsychiatrist. There is no one here in NV who deals with sleep disorders besides apnea.

I'm also on provigil and I raised my dose myself to 400mg 2x day which barely works. How is the Nuvigil? I haven't heard of that and would like to try a new med.