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Barbie

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This week my husband is going to get (I Hope) his first sucessful FVC test and CO2 test done by a respirtory therapist at our home.

They are bringing two different mouthpieces and I think they ordered the mask that I kept insisting on. I had mentioned it to my ALSA coordinator that we had nver had a successful test done because of lip leakage and she arranged the whole thing.

You would think that at an ALS clinic they would come up with some device to get a good reading on ALS patients !

Anyway--keep your fingers crossed for us. Hubby thinks it is silly and is not holding out any hope. I will keep you updated...
 

joni51

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He isn't bulbar is he? It was hard once he could not cup the mouth piece.. Hope they can get a good one on him.
 

Barbie

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Hey Joni! havent seen you for a while! I hope you are doing ok dear one. My husband is not bulbar--he was limb onset but also has many speech and swallowing issues too.

his original symptoms were extreme fatigue, weakness and slurred speech for a year or so. then one day he had a massive full body "attack" ( I don't know how else to describe it)and was diagnosed within a month. All his classic symptoms were extreme at that time. Even at the begining he could not get a reading on that scuba mouthpiece. After a 3 or 4 clinic visits and unsuccessful attempts, he started to refuse the the FVC test because it was futile.

I hope you are doing ok and have some support this christmas season. I know it will be hard for you this year.
 

cubcake

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That's where we are.....can't get a good reading so no one does the test anymore. In the mean time, I'm left completely in the dark. :(

I wish you the best of luck on this!
 

Danijela

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Barbie, SNIP test is done via nostril, no seal needed and some say more accurate than FVC. Co2 via earlobe/ painless blood sample and O2 via an oxymeter/finger should give good overall picture. Season's greetings! X Dani
 

old dog

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This is very interesting. The ALS Clinic I go to insists on my blowing into a small, hand-held spirometer every time I am there. I can't make a good seal on the darn thing, so the results are always questionable. Also, the instructions are to exhale slowly and then blow as hard as I can. After exhaling slowly until I feel like my lungs are empty, I sure can't blow hard. Extremely frustrating!

I don't have breathing issues but had to go through a sleep study at a sleep clinic to prove it. The pulmonary specialist in charge recommended that, if future testing is required, I take an oximeter (clip on finger) home and let it record oxygen levels while I'm sleeping.

I thought there must be some alternative to a spirometer for measuring FVC. Hope this testing goes well.
 

HelenL

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The SNIP test must be the test they used during the Dex clinical trial... I do find it easier than blowing in that tube!
 

Barbie

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still waiting for the "test"....:( they scheduled it for jan. 7....

will ask about the SNIP test. what does SNIP stand for?
 

Barbie

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Re: FVC testing at home --UPDATE

Got tested today--

O2: 88%
NIP: -14 (he said healthy would be about -28?)
VC.: .84L (so I think this is about 24%?--normal is 4L?)

CO2 meter was broken so coming back next week to do that.

So,

all you experts, any imput? :-?
 

themommy

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Hey Barbie,
When Micheal's CO2 is on the rise, his eyes get a cloudy look to them.....(It looks almost like he has cataracts - but of course he doesn't). Just FYI

Amy
 
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