Posted 30 November 2013 - 10:35 AM
Posted 30 November 2013 - 01:05 PM
My brother (only full blood sibling I have) and I were talking about my N the other day. He told me that he was getting ready to have a sleep study done because his doctors don't think that he is going in to rem. This got me wondering if my family is predisposed to have some kind of neurological disorder. What do you think?
There is not enough information to answer this question well.
If you have Narcolepsy, that answers the question of a genetic predisposition, since N has a genetic link.
If his doctors "think he is not going into REM sleep", it is just a wild guess until a sleep study is done. There is simply no way to tell until without the evidence. Just the fact that you have N and he is your brother is a "high index of suspicion" for N in your brother.
I hope that he is having both a PSG and MSLT reviewed by a Sleep Medicine Specialist (Neurologist who is Fellowship trained in Sleep Medicine), not a Pulmonologist or other specialty who is simply Board Certified in Sleep Medicine.
As his brother, you are a key advocate to assure he has the correct medical team seeking out the correct tests for an accurate diagnosis.
Is your brother on any medications, like antidepressants, that can suppress REM? If so, it could present SOREM on his MSLT and prevent an accurate diagnosis.
N is a hard diagnosis to make when a physician does not know how to look for it- and it is an easy diagnosis to miss when a physician does not know what to look for. Please make sure he has the right doctor looking after him.
Posted 30 November 2013 - 02:22 PM
Narcoleptics need LESS REM...we're always in REM and do not get the restful stages of sleep. Narcoleptics get Sleep Onset REM (SOREM) which is another example of too much REM and not the restful stages of sleep which SHOULD precede the onset of REM. That is what makes SOREM in MSLT's diagnostic.
I don't want REM...I want REST.
Posted 30 November 2013 - 03:57 PM
Posted 04 December 2013 - 12:13 AM
Why is everyone so anti the pulmonologist sleep specialist? I love my doctor ( I drive 90 miles to see my doctor!) and he flound my diagnosis, was gentle when he served it up, got me on the right stimulant. He also diagnosed me with asthma. He did thourough tests about and beyond the sleep study, lung tests, chest xrays, blood work... he was thourough about my health. He has a total picture of my health. He understands my condition, he gives me the time I need, and when I asked him "is there anything you could do that I would just wake up and feel GOOD." He said, "Xyrem" I said, "Isn't that the Date Rape Drug". He said, "Yes, it is. "You go read about it, ome back and then we'll talk, okay?" So I went away and read about it. First i said, oh no. HELL NO. I hope I'm allowed to sweard. I was like NO *BEEP*ING WAY. And then I heard I might get a ripped body. And tha's cool. But I also heard that the sleep ROCKS. Ripped body.... sleep Rocks. So went to my doctor and delivered my well thought out plan; Okay = Dr. Ashtyani, I need Xyrem becuse I want ripped abs and excellent abs. Oh, and an excellent night sleep!
Posted 04 December 2013 - 09:36 AM
You crack me up browndog319! I was stoked about the whole possible HGH stimulation thingy too, etc. And lo and behold, I lost 35 lbs on stimulants + Xyrem, and lost tons of body fat. Now I have to schedule snacks to make sure I keep enough weight on!
We're definitely bringing sexy back... while we're awake...
Also, I agree. My Pulmonologist was my main advocate (though I agree that a lot of neurologists are likely more familiar with N and similar Dx's). The Dr. I had before him was rude and skeptical, but my Pulm. Dr. not only let me repeat my MSLT because I was so nervous that my results weren't what we were expecting, but he also gave me 4 months worth of Nuvigil samples before I even had my official N diagnosis, which he was convinced of well before I was. =)
Also, back to the Family Disposition thing... anyone else here have family members who also have Narcolepsy? My maternal great-great aunt had narcolepsy with cataplexy, and my maternal side in general is rife with sleep disorders/neurological disorders.
Posted 28 December 2013 - 06:45 AM