Originally Posted by perfectlypeg

in one night. My sleep onset time is 30 seconds. I fall asleep everywhere, even while on the toilet and even standing in front of the refrigerator. I am on oxygen which has helped the most. Bipap didn't work well. I haven't been rechecked since my two diagnosis a year apart 2005/2006. Quite frankly I am really scared. It was after I received the diagnosis and they told me I shouldn't expect to live past six months that I began staying up as late as I could because I was afraid to fall asleep. I sleep on the couch because when I sleep in the bedroom no one checks on me and I can sleep for days on end and my husband just lets me stay there. I do not have a supportive home life. I wasn't diagnosed for five years even though I went to doctor to doctor complaining of EXTREME fatigue and falling asleep at weird times. They just kept calling it empty nest syndome. I knew better, but never thought of central sleep apnea. I also do not make ennough cortisol or ACTH, the pituitary hormone. I also have an extreme immune deficiency. Which came first? Who knows. To be ill with four illnesses and having to see all those specialties as well as any labs and MRI/EKG, etc. etc. I do not have enough time or strength to see all the doctors that I need to see. You know the ones. That will see you a few appointments because they don't believe you have what you say you have and they are going to prove you are crazy. but the labs come back confirming as they studder while sending you packing because they don't have a clue.My last neurology appt didn't even last one whole visit as he was screaming at me that I should have never been referred to him and that it was irresponsible for the other doctor to send me and was absurd that I even would come because he didn't have the expertise in Central Sleep Apnea. I gathered from his yelling at the top of his lungs that he wasn't about to learn about it either. In the past three years 90% of my doctor appointment have been first visits where the doctor refused to take me as a patient. So I am very low on doctors at the present time. I have been on IV infusions monthly for the immunity problems.
Regarding my sleep apnea, the sleep doctor explained it like this. "Out of a 60 minute hour, I am not breathing 40 of those minutes." Its no wonder I can't stay awake. Presently I take stimulants to wake me up, but the dose is large and it is barely getting the job done. I maybe get what I call a window of about two hours per day of alertness, but not sustaining alertness. It only lasts for as long as I am awake. Tomorrow I start over.
I don't think I have that MG, though I don't know whaT IT is.
Perfectly Peg