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Danijela

Senior member
Joined
Dec 3, 2008
Messages
667
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
Hi All,

I was wondering if anyone had their FVC reach a certain figure and then 'plateau' for a prolonged period of time. I have seen a few examples on PLM but I am never sure if people just copy the previous result or this is truly the state of affairs.

The reason I am asking is that due to loss of abdominal muscles, and presumably intercostals, my partner's FVC has dropped to about 80, but I absolutely refuse to see the steady drop!

Also, has anybody got a low FVC reading but no obvious breathing difficulty?

Dani
 
My husband had no obvious breathing difficulties when his FVC was 80%. Breathing issues were first noticeable around 60% for him.
 
My wife lost 5% a month for 15 straight months. She started seeing difficulties at around 50%. After she reach 25% she did plateau for about three months then started down again slowly, 2-3% per month. In Oct her FVC was 18% and the clinic said they would not be doing that pulmiary test any more.
 
Thanks Missy and Jim. I am assuming that the lack of responses means there is only one way...But then I am always hopeful as my partner has not completely lost the use of his left arm and that was the limb of onset, over 3 years ago...Hoping for something diffuse.

D
 
Dani, my clinic tester told me I may plateau. I have to call them to see when I can return; I'm overdue because of insurance limiting me. I have new insurance... but you see, I'm waiting. If I learn there's been no change, I'll tell you when I know.
 
Thanks Ann. I do hope it's a plateau for you. We have purchased a spirometer and monitor at home. It's a double edged sward...D
 
I've had a few plateaus - but my progression has been generally slow

During the first 4 years of my illness I had very gradual decline and was still around 90%. Then in one 6 month period I went down to 60%. I've been hovering around 50-60% for about a year and a half - although in the past few weeks I've noticed some changes so there has probably been another drop

Even so I rarely get out of breath. I use a bipap at night but I can nap in the daytime without it.

I was still riding my hands-free recumbent bike this past fall (there is too much snow now for riding) and going up steep hills without a problem (slowly in low gear).

I was also swimming at the lake this past summer - but I was gasping for air unless I sat on a pool noodle to help raise my chest chest out of the water
 
rcharlton, thanks for this, and really good to hear. I am happy for you and hope you continue with the slow progression and remain as active as possible. Do you mind me asking what kind of onset you have?

My partner FVC remained 'normal' for about 3 years from onset. It was in the upper then lower 90s till the late summer 2010. Then it went down to 80 in 3 months. He feels he can not 'expand' his lungs as much, but sleeps flat on two thin pillows. No other respiratory symptoms at present. Except yesterday while in the pool he felt 'more pressure' on his diaphragm but his breathing still remained ok (from what I could tell). His caugh is weaker, but he thinks this is something to do with his abdominal muscles that are gone, and maybe intercostals, but not neccassarily diaphragm. Neither of us as experts :) Dani
 
rcharlton, thanks for this, and really good to hear. I am happy for you and hope you continue with the slow progression and remain as active as possible. Do you mind me asking what kind of onset you have?

My partner FVC remained 'normal' for about 3 years from onset. It was in the upper then lower 90s till the late summer 2010. Then it went down to 80 in 3 months. He feels he can not 'expand' his lungs as much, but sleeps flat on two thin pillows. No other respiratory symptoms at present. Except yesterday while in the pool he felt 'more pressure' on his diaphragm but his breathing still remained ok (from what I could tell). His caugh is weaker, but he thinks this is something to do with his abdominal muscles that are gone, and maybe intercostals, but not neccassarily diaphragm. Neither of us as experts :) Dani

Hi Dani

I suppose I had limb onset - it was my hands that brought me to the doctor - but I also had bulbar symptoms at the same time - choking when drinking, drooling at night, tongue fasciculations - so who knows

Right now I've pretty much lost the use of my hands and arms - my neck is weak - speech impaired - tongue nearly useless - breathing impaired - but my legs are still good - sense of humour intact

I'm pretty sure my breathing decline is due to the atrophying of other muscles and not my diaphragm
 
bummer

just got back from the ALS clinic and my FVC has dropped to 37% - but i'm still rarely short of breath
 
rcharlton- that sucks. im sorry to hear that.
I know i wasnt part of the above conversation, but i just wanted to let you know that i am thinking of you.
its good to hear that you arent having issues with breathing, even with your FVC that low.
 
rcharlton, thanks for clarification about the onset, and sorry to hear about the drop in FVC. I have spoken to a PAL whose FVC is under 30 but when they do a monthly sleep study all the levels come OK, she is breathing unassisted. Let's hope you hover around 40 mark for a long while. Dani
 
Thanks for the support Dani and Liz.

The drop in FVC may relate to an injury I suffered in early December

I was running for the monorail at Disney World and I did a face plant which resulted in my being knocked unconscious, a concussion, a bloody face, a bruised rib cage and hand - not to mention an ambulance trip, x-rays, catscan - my rib cage was pretty badly bruised up and it hurt to move or breath - but I guess I was lucky not to have broken anything
 
I was going to suggest a bad seal on the mouthpiece. I've seen that but after your mishap I'd bet on that as the reason. You might find that you're back to normal? so to speak next time. I had my test a week ago and still at 44% for about a year now.

AL.
 
I was going to suggest a bad seal on the mouthpiece. I've seen that but after your mishap I'd bet on that as the reason. You might find that you're back to normal? so to speak next time. I had my test a week ago and still at 44% for about a year now.

AL.

Thanks for the words of comfort Al - but my breathing is definitely off. For such a straight shooter I never knew you to sugar coat anything- you must be getting soft in your old age.
 
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