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Found 5 results

  1. Hi, Has anyone out there received a false diagnosis for narcolepsy? Is it even possible? I have a mystery illness that I can't figure out and I have seen all the main specialist and done all of their tests and found nothing but a few elevated antibody tests. Finally had an MSLT, I went straight into R.E.M. For the first two naps and screwed up the other naps because I took a tiny dose of adderall so I could stay awake between naps (this was after the second nap). It was so painful to stay awake, I didn't even think how adderall could possibly screw up the rest of the tests, derr.. I was dumb and tired, what can I say. Either way, I had two naps going straight into R.E.M. which qualifies me as having narcolepsy. I was in complete shock because it wasn't even on my radar as a possibility. When I talked to my doctor he said he is almost sure I have it, almost sure?? He said, that because it was the first two naps, it could be that I was still in the circadian ryhthym time frame and that could cause a false positive. Then my sister tells me that her sleep doctor told her that sleep apnea can so give a false positive. Has anyone experienced this? I have so many other symptoms that I either have narco plus other stuff or maybe whatever is going wrong in my body is causing the narcolepsy. I would love to hear from anyone with info or experience with this, thank you so much!
  2. I think I might have narcolepsy without cataplexy, but I'm worried I won't get diagnosed. I have a sleep study set up for PSG but no MSLT even though my primary who send the referral to the sleep doctor is the one who suggested I may have narcolepsy (and my psychologist agrees). Can they diagnose narcolepsy based on REM onset on a PSG, or do you think they would have to rule out apnea before getting an MSLT. The thing is, I'm worried I'll have apnea and they'll treat that, but since reading about narcolepsy I've had so many of those symptoms since I was 14. I'm afraid that it will go undiagnosed if I don't get an MSLT and have some apnea. I dint think we have any neurologists in my city who do sleep medicine, only pulmonary. Symptoms are a lot of sleepiness without regard to how much sleep I got the night before, though it's certainly worse without adequate sleep. I always dream during naps, which I sometimes take in toilets because I'm at work or in public and there's nowhere else to sleep without being seen or having my stuff stolen. I have wild and vivid dreams that I usually realize are dreams even if I don't take control of them. (Like I realize I'm at work when I'm at work but I don't often think that thought consciously, it's just the knowledge is in my brain). I also will doze off standing up, and if I'm trying not to fall asleep I will continue with my behaviours. Usually at work this happens when I'm typing, and I'll start writing about whatever is happening in my hypnagogic dream. I've had this problem of falling asleep while writing since high school, waking up and finding my notes are illegible scribbles, sometimes including words having nothing to do with the subject of the class (found the word Idaho in sleep notes from a pre calculus class). Incidentally I've been put on phentermine for weight loss, just a short 90 day course and there will be no refills. It's an amphetamine, and since starting I've started it I've been so much more alert. I don't feel high or super energetic, I just feel like a person, finally, a human who can actually function in the world. I will still get sleepy if I didn't get enough sleep, but I won't actually fall asleep or even need to. It's just kind of like a sweet, pleasant sleepiness that doesn't ruin my job performance. But I'm only on that medication for a short course. I'm afraid I'll get put in CPAP and just go back to falling asleep all the time. Now that I know how normal I feel on the medication I'm terrified to stop; I cannot cannot go back to how tired I was before. I thought it was normal and inevitable to feel that way, but now I know it's not....i don't ever want to have to feel that way again. I took my medication late today and started dozing again at work and writing my dreams into important legal documentation. I HATE THIS. I guess I'd like to hear some thoughts on how hard I should fight to have the sleep doctor seriously consider narcolepsy. I thinks it's possible my symptoms could be explained by sleep apnea, but I think it's unlikely that I've had apnea since I was 14. Does that sound reasonable?
  3. Background: I was hit by a truck while cross the street (in the crosswalk) back in August. I have since had two surgeries: repair of the labrum in my right shoulder and more recently multiple things done for my right ankle, including tightening the ligaments. I have had nerve pain off and on through my right arm and elbow down to my index finger and thumb, and already had a nerve conduction study showing I have nerve damage in those digits. That neuropathy is more like tingling and numbness rather than true pain though (at least now). My current problem is that I am having EXTREME nerve pain down in my right ankle along the outside near my incision up to my toes, typically between my 2/3 or 3/4. My orthopedic surgeon thinks it's likely the superficial peroneal nerve and was probably irritated with surgery. It is right near the arthroscopic port so he did reassure me extra care is taken not to lacerate or damage the nerve, but stretching and irritation are not uncommon. It will happen at random times or after I've been sitting in a chair when I can't prop my leg up, but mostly it happens out of the blue even when I'm laying down. The pain can be annoying from a slightly burning feeling to excruciating, doubled over pain from the nerve seemingly firing off like crazy. It sucks. I'd like to think it's temporary, but I still have the neuropathy in my right arm from the accident and it happened a little under 10 months ago. Which brings me to my dilemma - my orthopedic surgeon suggested gabapentin, but immediately followed with his concern of it potentially interacting with my medications for N+C, or the N+C in general. (He's a good doctor and defaults to my neurologist, AND thankfully considers my N+C and meds.) I wasn't able to call my neurologist yet but checked for drug interactions myself and it seems like gabapentin with Xyrem can be a major problem as they're both CNS depressants. However, I am on APAP for complex sleep apnea (thanks to the Xyrem) so I do already have a means of breathing during the night. I also take Provigil, HCTZ, and acetazolamide but it doesn't seem like there's a known interaction with those meds. I still plan to call my neurologist, but any experiences on both gabapentin and Xyrem are greatly appreciated!
  4. Hello everyone, I wanted to share this article I just ran across, I thought it was really informative. It discusses other health conditions that are commonly found in PWN. http://www.sleepreviewmag.com/2015/05/narcolepsy-comorbid-conditions/?ref=cl-title
  5. --edited for privacy, as I wrote too much in my first post ages ago, apologies all!- Short version for sake of politeness: Sleepy since late teens, large impact on all aspects of life, now in 30's. 15+ years of doctors, no major symptom relief as yet, the usual checklist of diagnoses like Chronic Fatigue, Depression, Insomnia etc.. in that time. Finally identified significant Sleep Apnea on a PSG in my 20's. All available Apnea treatments, over many years, failed to make any difference for me, weight was a non issue, I am skinny. After giving up for many years since, new doctor immediately discards Apnea as root cause of symptoms. Tells me my MSLT results and symptoms match N more than anything, or else possibly IH, as the primary cause of my long term problems. Possibly also DSPD in the mix, as I am an extremely late sleeper and become very nocturnal given half a chance. Currently my official paperwork now says "longstanding N or IH" as my diagnosis, and am given the advice of 'acceptance' of all this lately, more than anything else. I have sleeping pills for insomnia and was given a sample prescription of Provigil for first time in my life at last appointment. I am caffeine-sensitive though (anxiety/mania-esque reactions to coffee) so am quite cautious and hope it works out ok. Have never taken any prescription or illegal stimulant so it's very alien to me, but there's only one way to find out. Thanks!