After about two years of visits to two neurologists, I was referred to the ALS Clinic associated with Oregon Health & Sciences University. There, I was diagnosed with PLS in a very short time following an EMG. I am happy with the care I have received, and now attend the clinic every four months where I am usually seen by a neurologist, a physical therapist, and a speech therapist. However, I feel that the purpose of these visits is to observe and monitor my progression; there is very little that can be done.
Early on, I went through a breathing test which came back as inconclusive because of my inability to make a tight seal on the tube one needs to blow into. About a year later, I consented to a sleep study which confirmed I didn't have a breathing problem when sleeping. I have also had three surgeries without experiencing any respiratory problems. Now, my neurologist wants me to have a test where I wear an oximeter (the clothespin-on-the-finger thing) while sleeping which will record my oxygen levels during the night. I have refused this twice but will eventually have to consent to keep from being labeled totally uncooperative. I keep saying that I should know if I'm oxygen deprived. I wake up during the night because of hip and shoulder pain and also have chronic sinusitis so my nose gets clogged, and I have to change positions. I don't need the stress of having a cumbersome machine to cope with at this point, so I understand why you don't want to use the CPAP.
