My hubby's breathing is getting worse. His bi-pap settings are 20/15 with these settings he doesn't wake with a headache and sick at his stomach. We went to a new Respiratory at our local hospital, they did a breathing test and said his breathing was 83%, the last time he was at the als clinic it was 63%. He just had his settings increased on the bi-pap the day before this newest breathing test. I am praying this is correct but I don't think so and neither does he. He asked the therapist why he was having so much trouble breathing if his numbers were so high? No reply. Anyone ever heard of this?

Shelley ... I hope it is correct. That would be great.

A while back, I had a small increase in FVC (5 to 10 points, can't remember exactly), and like your husband, the tests were done by two different therapists at two different locations. My ALS clinic reading was the lower one. A 20 point difference seems a lot, especially if his breathing feels worse to him. Hope it's true, but I understand why you hesitate.

Shelley,

I have not heard of it, but that doesn't mean squat. I hope the good news holds on.


"Excuse me miss, I'll have some of what he is having"



Glen

Hi Shelly,

I am a RT and do Pulmonary test on children. I know that if the clinics were different then the machines could have different "predicted values"... in other words using different calculations to come up with the % numbers. Instead of looking at the " % " that he was able to achieve, If you have copies of his old one, look at the raw number ( liter flow) next to it and compare it to his old one. This value should not change. I'm sorry if this is confusing....it is kinda hard to explain. Hope this may help. If not the pulmonologist should be able to explain the difference. I am with everyone else though..lets hope they are truely that good.
Barb

Always wondered what was normal precentage 100?

I think that the way it works is that they put your age, gender, height and weight into a calculation of what you "should" be able to blow as an average person and if you have a greater capacity then you are above 100% and if you have a lesser capacity then you are below 100%. So really you are blowing a percentage of the average. Please someone correct me if my explanation is incorrect.

My first test was at 110% and the last one in June was at about 80% so I am now being asked more pointed questions about how I am sleeping and whether I thought that I needed breathing assistance. So far, no...

hey all... i wonder if these fluctuations seem of significance to anyone in the ALS world in explaining how the disease works?

i have often read about PALS who have days where they feel stronger than others, days where their voice is clearer, weeks where their breathing is better?

perhaps there's a relapsing/remitting element to ALS, like there is with MS... does anyone know if this has been explored before?

Barry, I think that is exactly the way it goes, you explanation was about the best way to explain it, that is exactly what I thought but had know way of explaining it, you did a great job.

Yes...far as I know Barry is right on the money...great explanation...also was told it is important that comparative tests are done on the same equipment as the % is a bit of a variable thing from unit to unit. Mine was 125% of expected at diagnosis Feb08 and was down to 85% in late May at my last test. The respirologist was happy cause it was 85....I wasn't cause in my mind I've lost 40 points total. It is a bit of a subjective thing but is one of the few things with this disease that you can put ANY kind of a number on!
I figured if I was 25% above expected average for a healthy person my age and weight then they don't expect too much ;)
I don't think it is a thing to fixate on but is rather a trend indicator of the decline or hopefully lack thereof!
Rick