Anyone out there with PLS on a Bi-Pap?

[old dog]

At my latest appointment, I apparently failed the spirometer test when flat on my back, so the neuro talked to me about a Bi-Pap. I'm not aware that I have breathing difficulty. I'm a real klutz when it comes to trying to use the spirometer. I'm unable to make a seal on the thing, as whatever controls my lips doesn't work right. Also, I can't understand how one is supposed to blow out as hard and fast as possible and then continue to blow slowly for at least six seconds without taking another breath. Seems like it has to be one or the other.

I'm going to suffer through a night at a sleep clinic where other methods of measuring oxygen/CO2 levels are employed. If I have to start using a Bi-Pap, so be it. I'm skeptical because my blood oxygen and CO2 levels are very good. Comments, anyone?

 

[AKmom]

I guess it would be a possibility, but you might find more info on the A L S side of things just for info on this. I am not directly aware of any of the pls'ers I know being on bi pap, exept I know that notme I think was on one?

 

[old dog]

Thanks, Joyce. I've read some more about symptoms of oxygen deprivation, and I don't seem to have any of them. But, as I said before, I will put up with a night at a sleep clinic to find out for sure.

 

[notme]

Just because those levels seem okay during the day, they may not be at night.

I was ordered a cpap, and my doc recommended bipap instead. I don't have the daily headaches when I use it at night. But, I guess it depends on your numbers. Some do fine with numbers were mine are--I just don't. My FCV (Fvc?) is in the 70's and I get very, very short of breath with the slightest exertion.

 

[old dog]

I don't know what my numbers are. The one breathing test I've had was inconclusive, because of my inability to make a good seal on the mouthpiece. The technician who administered the test indicated my inhaling was fine but my exhaling was weak. I'm always asked if I'm short of breath, and my standard answer is, "I don't know. I can't go fast enough to find out." I'm sure I would be winded if I could move fast enough to exert myself. I have a small recumbent bike but can't pedal very fast without my right foot (bad side) slipping off the foot rest.

Thanks for your input, not me.

 

[deliagarcia1]

At my latest appointment, I apparently failed the spirometer test when flat on my back, so the neuro talked to me about a Bi-Pap. I'm not aware that I have breathing difficulty. I'm a real klutz when it comes to trying to use the spirometer. I'm unable to make a seal on the thing, as whatever controls my lips doesn't work right. Also, I can't understand how one is supposed to blow out as hard and fast as possible and then continue to blow slowly for at least six seconds without taking another breath. Seems like it has to be one or the other.

I'm going to suffer through a night at a sleep clinic where other methods of measuring oxygen/CO2 levels are employed. If I have to start using a Bi-Pap, so be it. I'm skeptical because my blood oxygen and CO2 levels are very good. Comments, anyone?

I have an appointment with a sleep lab this month. There is nothing to it. Oh, I have PLS.

 

[old dog]

Delia - Let us know how it goes. I don't have a sleep clinic appointment yet--someone has to write the referral. Waiting to hear from my neuro to see if she will handle the referral or if I need to ask my PCP to do it.