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rangerbob

Member
Joined
Aug 16, 2010
Messages
24
Reason
Learn about ALS
Diagnosis
01/2011
Country
US
State
CA
City
Mountain View
She is a 32 y/o female.

Just last October (when she was diagnosed with ALS) her FVC number was at 75%. Went to 57% in Feb. Got back from pulmo this afternoon and it is at 31% now.

Here diaphragm readings were (MIP/MEP) were +15/+25 roughly...

Anything I should be on the watch for at this point...She is running out of breath after a sentence or two.

That metric has heightened my concern.

Thanks,
RB.
 
How often is she using the BiPap machine?
 
I know that a decline in FVC could account for headaches because of the CO2 buildup that is normally expelled easier. When my pals got on her bipap her headaches declined and she had a bit more energy.

Took my pals awhile to agree to use it though. Now she goes off and on.
 
My husband's FVC dropped dramatically from 1/2010 to 8/2010 ( he was on CPap) from 125% to 55%. He was put on BiPap in 8/2010, and it is still at 52%. We go next week to get a new reading. No question that BiPap helped him. He only uses it at night.
 
It is understandable that those metrics would concern you. My question would be the same as the others. Is she utilizing a BiPaP and if so how often. Some members on here utilize it nearly 24/7.
 
thanks for the quickly replies...

she uses the bipap everynight and has been for some time... she also uses at sometimes during the day. her daytime use of the bipap during the days isn't as much as it is at night.

just in the past month she has lost nearly all the power in all her fingers, getting bad legs cramps at nite, can no longer roll over and has lots of trouble coughing out excess saliva.

any other thoughts and/or opinions?

at this rate of the decline, i remain highly alert... it just seems that things are moving so damn fast for her...

THANKS!
 
Agree with all the recommendations that she use the BiPAP often during the day, if not 24/7. You may need to get different masks that are more comfortable for long-term use.
 
I'm dreading this stage boy. My pals is almost at it. It's scary to see how laboured their breathing can get at times eh?
 
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