clinic day today

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nebrhahe53

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Joined
Jun 13, 2014
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1,017
Reason
PALS
Diagnosis
06/2014
Country
US
State
Tx
City
Austin
Will see how much I have deteriorated
 
>Will see how much I have deteriorated

breathe deep!
 
Good luck. Haven't heard about the peg tube for a while. Presume it's working better. Mine is to be installed next week. Alex
 
53,
I'm beginning to hate clinic days for that very reason. To be sure, I appreciate the efforts and the concern from all of the staff, doctors and nurses but, in the end, it really does turn out to be "what else can't I do now?"
I had my clinic this Tuesday, and my respiratory numbers took a nosedive... that sucked! The weakness and atrophy everywhere else I can see and gauge on my own, but the 'numbers' they give at the appointment never seem to be a source of comfort!
Granted, I've been doing the quarterly clinics for 3 years now, so by comparison my 'progress' has been slow and not much worth mentioning. Still, it sucks when the downward slope gets steeper, and the progression faster than it has been.

When the hell are the smart folks gonna find us a treatment?!? Sure am glad they're trying, but in the famous words of Yoda, "No try; do!"
 
My FVC numbers went from 69 to 61 in 2 months. Was not happy with that. left arm a little weaker and weakness starting in right shoulder now. The PEG tube is doing OK now-still oozing a bit but other than that OK.
He actually mentioned a life expectancy based on my decline from last time-said about 2 years from diagnosis.
 
I was overwhelmed on my first and only clinic day, a week before EMG official diagnosis. Then I found the VA through a PALS widow. They don't do clinic days, but individual appointments are spread out, which I like much better. It helps that the VA Hosp is only 8 miles away. My last FVC was improved over the prior one, probably due to the cough machine, which I don't use every day.
 
I'll also add that I don't particularly enjoy clinic days, as others have said it just serves to remind me of how much I've slipped since the last visit. My wife however loves the interactions with the various pros, it helps her more than it helps me. I go for her.
 
Glad to hear the peg tube is working better. We're about the same breathwise. I was 57 two weeks ago. Guess according to your doctors that gives me about a year more. Alex
 
He actually mentioned a life expectancy based on my decline from last time-said about 2 years from diagnosis.

I'd have punched him in the throat! :twisted: Twice.
Or at the very least asked him to borrow his crystal ball, the one that none of the other good doctors seem to have.
 
>I'd have punched him in the throat! Twice.
Or at the very least asked him to borrow his crystal ball, the one that none of the other good doctors seem to have.

Actually that was quite an improvement over the home health care nurse we had over last week. I found out yesterday that she told my wife and daughter that I had about 3-4 months. They didnt tell me that till after clinic yesterday.
 
My SVC is measured monthly in the trial I am in. In April it was 80% and declined to 72% in August, a 10% decline. So I have a little over two years remaining? Nope, in September it was 78 %.

These breathing tests have lots of variability and can only read lower than actual . They cannot read higher than actual because your lungs can only hold so much air. But if you don't fully inhale or exhale it will read lower. A couple of readings a year cannot predict mortality, plan on living a while longer.
 
Don't believe any of that stupid nonsense on how much time you have left. Nobody knows when our time is coming. Dr. should have kept his big mouth shut on that one.
 
Anyone who makes these kinds of predictions to any PALS should be sacked and all medical qualifications of any kind taken from them.

OK I'm harsh there, but do they have any idea what kinds of personal impact these kinds of statement can have?

No one can guess this magic formula. ALS does what it will at the speed it wills, we either help it go faster, to it just goes at it's own speed.

Sorry that your breathing is declining Neil, I hate this monster!
 
Weren't you recently ill? That can have a lingering effect on your numbers that will take a while to resolve
 
yes, I still have mucus in my lungs. Haven t been able to use the vest because it hurts the peg tube so I just use the cough assist.
 
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