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bmb3641

Member
Joined
May 11, 2008
Messages
18
Reason
PALS
Diagnosis
10/2007
Country
US
State
Montana
City
Columbia Falls
Hello
I was diagnosed in 2007. It started in my right hand and my progression has been fairly
slow. In the last few months my weight went from 198 lbs to 173lbs. Both hands and legs are affected. My lung fvc is still 94% but my throat is starting to become affected.
I have had aspirating pnemonia in the past. I can drink as long as my head is straight but if it is tilted back at all I can't swallow and it comes out my nose. Is this normal progression? Do I have to worry about choking in my sleep? Is there any suggestions?

Thank you
Brendan
 
your lung fvc is very good this is a hard one to answer .if i were you i wouls have a swallow study test done and thjere able to give you the answers your looking for hang in there godbless
 
There is actually no thing as normal progression. Everyone is very different and there is no way to tell how quickly or what is going to happen next. If you are losing weight and aspirating I would suggest a PEG (feeding tube) as soon as possible.
 
That is great that your FVC is still at 94% after almost three years. It points to a slow progression and hopefully a long lifetime ahead.

I agree with Joel and Jeff, a swallow study to see how that is working and then consider a PEG tube to keep your weight up. You don't want to let yourself get underweight, that can really hurt survival. Plus if you are losing you are not eating enough and that will tend to reduce your energy levels. Often when people go to a PEG they say they feel much better and have more energy.

Good luck and I hope your progression continues to be slow.
 
Go for the peg tube! I started with slurred speech in July 2007 and now cant talk, eat or drink so I would not be here without my peg.

Good luck
 
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