My PALS slept restlessly at night and would fall asleep multiple times during the day. She would even fall asleep in the middle of a conversation from time to time. She was also steadily losing weight, month after month... even though her diet had not changed. And she'd begun to notice that she was having difficulty breathing as she laid backwards towards a flat position. Her first neuro, certain she did not have ALS, would just shrug his shoulders at her breathing difficulties... only going so far as to test her ability to breath. As they tested her, fully sitting upright, they found no problem.
Her next neuro, an ALS research neuro at Johns Hopkins (Baltimore, MD), immediately jumped on those indications and ordered her a BiPAP (it was delivered to us the very next day). He said that he believed that her lung function was beginning to diminish and that, when laying down, gravity was making it more difficult for her to breathe. Not only was she not getting enough air "in"... but she wasn't getting enough carbon dioxide "out". As such (and particularly at night when she was prone) her body was trying to compensate and work harder trying to help her breathe. In essence, he said, it was like she was running in a marathon each night... burning excessive calories... and continuing to miss the sleep that she most needed.
From the very first day that she used the BiPAP (which helps her breathe air in and pulls CO2 out), her weight loss immediately halted. And the need to take naps multiple times during the day disappeared entirely. Now that she was sleeping well at night and breathing well when laying flat, she wasn't tired during the day. She also realized that the headaches she seemed to wake with each morning were no longer present... likely due to the reduction of CO2 buildup.
I am of the opinion that a good neurologist, who properly understood ALS, would not need a sleep study to know that a BiPAP was necessary...
Jim
