Lucia, it's definitely worth calling and asking questions. You now have me curious. Keep in touch. Teri
Hi Teri. I live in Naples, Florida. I might just go to Rochester Mn Mayo clinic and ask my insurance if they will pay to get the spinal tap done there. Then it shouldn't cost much to have the Rochester Mayo clinic test the sample for low creatine levels.
Lucia, I understand now. How far are you from Rochester? Maybe you can have another sleep study that possibly could be indicative of Narcolepsy 1? Hey, have you ever thought of asking someone working at Rochester in that particular department how others that are out of state send their specimen to the Mayo Clinic? There has to be medical couriers that can transport for you! I really believe that heck they transport live organ donations across the country for transplants.
You are right, XYREM and XYWAV are life changers. I have insomnia at night, so I dose at bedtime and set my alarm for 3-4hrs later to wake up and take the second dose. I do sleep better with the XYWAV yet in the morning when I wake up exhausted, I try to convince myself that I am ready start my day.
Keep in touch.
Teri in Tucson
Hi Teri, Apparently the mayo clinic in Rochester Minnesota is the only place in the country that will test spinal fluid samples for narcolepsy markers (low creative levels). My sleep study did not qualify me as a type one narcoleptic because I was awake so much during the night and I didn’t get into rem fast enough (under 3 minutes). I have excessive daytime sleepiness though and I also have cataplexy so my doctor knows that I do indeed have type one narcolepsy. I desperately want to qualify for a Xyrem, because I hear that’s a life changer. Right now I dare not drive longer than 20 minutes.
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