I haven’t gotten an LP , although I’m curious about my levels , bc I assumed I’d have that problem as well with insurance haha

I don’t know if any other labs run the hypocretin / orexin csf study but Mayo Clinic. I would start there first, as most specialized LP studies are “send outs” to Mayo Clinic or Cleveland Clinic lab. You may have to have your doctor right a letter explaining to the insurance why this lab specifically needs to be tested and that the LP holds no value without it in the narcolepsy case. It doesn’t necessarily change your management unless you are uncertain about which type of narcolepsy you have, and in that case maybe will make it easier for you to get certain medications covered if your hypocretin is low

Lucia, it's definitely worth calling and asking questions. You now have me curious. Keep in touch. Teri

Another question. I had a lumbar puncture test in February because I had severe headache with vomiting and confusion several days. The drs were testing for meningitis and pressure which were both negative. Is there a test I should've asked for? I was diagnosed in 1997 and had a DNA test that year that satisfied my disability insurance it was literally all in my head which they did not cover. They find the tiniest loopholes. I was too sick back then to fight them. Oh I got off subject.

What is in the spinal puncture that proves narcolepsy 1? I didn't know there is a narcolepsy 1. So is there a narcolepsy 2?