Narcolepsy With No Rem During Mslt?
Posted 17 March 2012 - 12:35 PM
Here were my scoring/analysis observations:
EEG: EEG was unremarkable. Stages N1 and N2 sleep achieved. No epileptiform activity noted. ECG: Normal sinus rhythm. General: Patient's mean sleep latency was 5:17 minutes. No SOREM observed. Patient coughed off and on throughout the study causing arousals. She stated she had not been feeling well the last couple of days.
IMPRESSION: Abnormal MSLT with a mean sleep latency of 5.3 minutes. No sleep onset REM. Toxicology screen was negative. Prior OPSG notable for relatively early REM sleep. This combination of findings can suggest disorder such as CNS hypersomina, narcolepsy, or circadian rhythm disorders.
My MD underlined narcolepsy and states that I tested positive for N. Now I'm confused.....
From everything I have read, in order to be dx with N you will have REM in 2 of the 5 naps. I didn't reach REM in any of my naps. However, I was coming down with a cold and had a cough. And that did disrupt my naps. I asked the tech if that would alter the results and she said that she was noting every time I woke due to coughing. Also, just to inform everyone that I didn't do my MSLT following the PSG. That was about 2 weeks apart. The sleep center wouldn't do them back to back for some reason.
Sorry for rambling. I'd appreciate any imput.
Posted 19 March 2012 - 02:15 PM
I wish I was well because something has to be done about these neurologist ( lose there license for refusing to treat a serious disorder in which the patient has injured themselves repeatingly from cataplexy falls and fractures and the multiple auto accidents which in my case was mostly rearenders and totalled 2 autos) No patient should be neglected and allowed to suffer and if I gave treatment to my patients when I was a nurse I would of been brought up for patient negligence and been brought before the board of nurses, reprimanded, put on probation, made to take classes, supervised under another nurse and if not remedied lost my license to practice and good chance of being sued by the patient. I can not get my head around how these "professionals" are continued to practice medicine, but nothing is ever done to protect patients with this disorder, and I have gotten to sick from years of neglect from my providers that I am basically useless today at age 55 y.o.
It breaks my heart to hear the stories and it angers me too! But I am unable to help myself
Posted 19 March 2012 - 02:28 PM
Posted 20 March 2012 - 12:35 PM
I think the biggest thing with the MSLT is it is used to confirm a diagnosis, not to refute one. So if you had REM in 2 or more naps then it would be clear cut yes, but if you didn't that doesn't mean a clear cut no.
Posted 20 March 2012 - 02:28 PM
Posted 22 March 2012 - 09:41 PM
Again, thank you for taking time to write.
Posted 06 June 2012 - 06:10 PM
Two naps with REM is the standard diagnostic criteria for naroclepsy. However, for many insurance policies, you HAVE to do the MSLT immediately following the PSG for it to be considered a valid test. I really hope your insurance company does not deny covering your medications because of faulty testing procedures! Given those results, I'm surprised you weren't diagnosed with hypersomnia. Do you have cataplexy? As sweetsurrender mentioned, the presence of cataplexy almost always indicates narcolepsy. There have been some people who have been diagnosed on their symptoms alone when cataplexy is present.
Posted 06 June 2012 - 06:40 PM
Posted 13 June 2012 - 06:34 PM
Posted 03 August 2012 - 07:19 PM
Posted 10 August 2012 - 12:05 PM
I just went for my follow up visit today for my second sleep study. I wasnt' able to sleep during the first PSG and did not qualify for the MSLT. My doctor felt certain of N based on clinical symptoms of HH, SP, and what appears to be mild cataplexy but wanted me to have another study to make it easier to get approved for Xyrem. He told me to take something to help me sleep for the second study which I hesitated to do because I know that many psychotropics can suppress REM sleep but I went ahead a took the Seroquel so that I could hopefully get enough sleep to qualify for an MSLT. I slept most of the night and fell asleep in all 5 naps. I remember dreaming only a short time that night compared to my average sleep when I feel like I dream excessively but he said I was only in REM for 45 min all night. He said although I fell asleep in all naps I never went into REM but asked me if I dreamed and I said yes that I remember dreaming. He said that the studies were definitely positive for IH but that I have so many symptoms of N even without REM in the naps that he felt comfortable putting me on Xyrem. He feels like I do that the Seroquel affected the amount of REM sleep. He also said that I had several leg jerks during the night but not enough to disqualify me for the MSLT or rule out IH or N. I also believe the Seroquel caused that too as that is why I hesitate to take it when I can't sleep because it makes my body feel very strange.
My doc also said I didnt dream during either of my test, but I remember dreaming! Wonder whats that about? They didnt have a doubt in their minds even without the REM. During the night I woke no less then 20 times and in the naps I fell asleep with in 54 sec. all 5 times lol
I just started taking Xyrem (6 days now) the first night was pretty awful, but I can see some difference already and am so happy I got over being scared and just went for it!!
Posted 11 August 2012 - 09:22 PM
Though they didn't tell me to stop any of my meds leading into the PSG/MSLT. So, maybe I was REM suppressed. But, I had dreams during the MSLT. And, I was sure that I was a sleep faster than they said I was. Questioned whether they were only counting the second sleep of the nap as the nap, but doc didn't want to listen to me. Told me straight out that he was going to ignore me, until I stopped talking about the MSLT. Yeah, I'm paying a specialist with all his claims of fancy degrees and extra certifications...so he can just ignore me.
Later, my neurologist reviewed the MSLT, and said there was indication of REM before a couple of the naps....but I woke and then napped. But, he wouldn't make the narcolepsy diagnosis. And, since the spinal tap was also borderline... he used it as reason to give up and call it IH.
Then, a few months back...I'm in the ER.... Cataplexy. Doc says he has to do all this special documentation to put that diagnosis into my file. Which he does twice in my presence, because the first time he discovered that he forgot to start the tape recorder. Mentions he did an online search, and Xyrem might be the treatment.
But, next time I see him....I have Cataplexy, but not Narcolepsy...and he has no interest in getting approval to prescribe Ecstacy.
At least he finally knows what Cataplexy is. When I had asked him about it a few years ago, he rattled off the definition for Catalepsy, and told me no and ignored me when I told him he got it wrong. It was supposed to be my new year's resolution to fire him.....but I just haven't gotten around to it.
Finally, I end up seeing a psychiatrist...he reviews my MSLT and says it supports a Narcolepsy Diagnosis...and he says if it looks like a duck, quacks like a duck, then its probably a duck called narcolepsy. Plus he's the only doctor that actually treats narcolepsy patients in the city....and the only doctor in Xyrem success. Since he handles so many more real sleep patients than anybody else...he's thinking of taking control of the sleep lab and getting it accredited. (behavioral health and the sleep lab share the same section of the old hospital. The current head of the sleep lab started out as a sleep tech with sleep apnea...)
He asked if I had been taking anything that might have suppressed REM.... I've heard from other narcoleptics that Provigil can.... while it is listed as a common side effect for Lunesta that it disrupts REM sleep. Recall reading that it was interesting that Serzone, while it also suppressed REM....had the property of increasing stage 3&4 sleep. I used to be on Serzone. But, it isn't on the market anymore....due to liver toxicity. Don't recall if I looked to see what the other anti-depressants they've tried do....though generally they say most suppress REM. Some even eliminate it.
Anyways....I'm entering week 3 on Xyrem. I guess I did surprisingly well today, considering I just discovered that I forgot to take my meds this morning....