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Living with Narcolepsy

Second Sleep Study?


#1

Ok, so I’m 27 and as you might imagine, I’ve been dealing with insurance changes for the past year.

I’ve got Narcolepsy without Cataplexy. Self diagnosed around 2009, then officially diagnosed with sleep study in 2013. The 2013 MSLT showed sleep in 6 minutes, 1 minute, 30 seconds, and 1.5 minutes. I achieved REM in all 4 nap periods.

I was prescribed 200mg of Nuvigil once a day.

After switching insurances when I turned 26 in 2017 (4 years after the MSLT), I had to switch to Medicaid because of my financial situation and because of this I had to switch doctors. My new doctor was comfortable with my MSLT results and continued the prescription.

Fortunately (Unfortunately?), my financial situation improved so I no longer qualified for Medicaid when I turned 27. I still could only afford a catastrophic plan though. My new insurance forced me to switch doctors again and this is where we are now.

My new doctor has prescribed me a month’s worth of modafinil, but is requiring me to take another sleep study to continue my treatment. Of course my insurance won’t cover the sleep study because my deductible is so high so I’m now looking at $1800 worth of sleep study to pay for.

The question I have is this, do I really need another sleep study if my symptoms are the same when I’m not on medication? Will all doctor’s require a new study to continue treatment since my last one was 5 years ago? Or should I just switch doctors and hope the new one is more amiable to my situation?

I don’t really like my new doctor anyway, so I’m probably going to switch. That said, I’d like to know if it’s standard to get a new study done every “x” number of years or not.

Thank you!


#2

I did a quick internet search and there’s no set time frame for repeated sleep studies. The vague, general idea seems to be about every five years but I would take this with a grain of salt as every 5 years is also the standard for when most insurances cover a new CPAP machine. Which to me begs the question is the new study for the patient or so a new machine can be billed?

If you haven’t had any changes in the past 5 years I’m not so sure a new sleep study is warranted. You may want to look into a new doctor or second opinion first.

azurelle


#3

im no professional in sleep medicine. But if I were in your shoes I would opt out and not take the second sleep study. Ive only needed one sleep study to obtain my narcolepsy with cataplexy diagnosis, which was 4 years ago, and have never needed a follow up study. If you have it you have it.
No need to spend more money just to prove something you already have documentation for. But again, i am no professional in sleep medicine but im just telling you what my gut feels.
I hope you the best. The struggle is real. But we are tough.