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KimT

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PALS
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08/2015
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It's only me again.

I had a pulmonary function test at Mayo three months ago and one at U of F (Shands) this week. Mayo didn't include the raw data and Dr. Pulley wanted to do one of his own. It looks like U of F doesn't do specific tests of respiratory muscle strength and Mayo does???

Anyway, I don't see Dr. Pulley until late March and I saw some research that indicated the RV levels in a sample of ALS patients were HIGH and TLC was normal or close to normal at their first PFT. However, in all the other general research it says that RV levels with restrictive disorders decrease. I'm confused.

I'm attaching the two tests.

Kim
 

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Kim,
ALS can mean different ratios of restrictive/obstructive disease (one or more may be present but frequently the ratio changes later on) and rarely do we have baseline data pre-ALS, so any cross-sectional study you read has sample bias built in. The study you cite only had 32 pts, and noted that the bulbar onset ones had higher RVs. I'm sure some had obstructive in addition to restrictive disease (and bulbar weakness is its own "obstruction"), skewing the numbers. But generally, reduced RV and TLC signal restriction.

Your tests show a restrictive pattern [primarily] and evidence of obstruction as well, again not unusual in PALS. There is also a suggestion of mild pre-existing lung or vascular dz. The values shown would encourage me to obtain a BiPAP as soon as I could.

Best,
Laurie
 
Hi Laurie,

They are having me sleep with the BIPAP in February and immediately ordering the one we talked about so Medicare and BCBS supplement will pay (when my coverage starts in February). Both neuro and pulm. doc wrote out Rx for the S9 VPAP ST-A so I will be using it before I see Dr. Pulley next time.

I'm not sure why Shands doesn't test for "breathing muscle strength" in their base PFT. I guess because it wasn't diagnostic for ALS. Mine showed normal both times at Mayo, even a year ago when I somehow strained my intercostal muscles and felt like my ribs were broken for a month.

Thanks for all your help. My Daytona pulmon. doc is having a special RT come for my BIPAP sleep test.

On another note, I gave up my night dose of Valium (it was only 2 mg) and I think I'm waking less through the night.
 
They asked me if I had ever smoked. No, but I grew up in a house up North with four chain smokers and, to this day, I can't be around smoke because it irritates my lungs. Same with perfume. I watched my father die of COPD in 1988. I wish they had the technology they have today to assist breathing.
 
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