Question about Lungs and ALS?

[seattle86]

If you are diagnosed with ALS, how long would you notice a change in your breathing? Would you notice that you are short of breath early on, or does it take time for this problem to develop?

I have been finally getting over my ALS fear... first with my arm weakness (not apparent any more) then bulbar (slurring has faded away, but I am still stuttering and stammering to find words..that's another whole issue) but just when I finally get over this, another problem is creeping up. I seem to be having shortness of breath. I first noticed this in early July, but it has gotten worse.

It feels like there is a strangle on my lungs. Luckily for me, I had a Pulmonary function test done today. This test is required for new incoming firemen. I knew that if I passed this, I might finally put my ALS fear to bed. I performed the test three times, as required. The first time, the instructor was not satisfied. He said it was not as good as it should be someone my age. Second time, WORSE. Third time was a charm. The instructor said my numbers were within the range that they would except for new volunteers. Although relieved, I am wondering how my numbers fared compared to everyone else.

I know this post will probably be blasted, but maybe that will just put my fears to bed for the final time. I mean, there isn't much more I can link ALS to.

 

[t34gib]

Go put out fires, both literally and figuratively. They always do several tests. Maybe you didn't take a deep enough breath, maybe you pushed it all out too fast. Whatever, have a great life and save the babies.

 

[seattle86]

Thanks. I had three tests done because it is required by my department and by the company performing the test.

 

[joelc]

If you did have ALS each test would be worse than the last one. To answer your question, as with anything to do with ALS there is no way to tell the time frame for things to happen.

 

[seattle86]

Thanks joelc I never thought about that. If my lungs were weak, performing this test three times would have been hard. I recall the instructor saying "perfect" and "that's what we were looking for" after the third test. thanks

 

[tdamess]

Neuromuscular Trial/Study
DISEASE CLASSIFICATION(S):
Amyotrophic Lateral Sclerosis(ALS)

NAME OF CLINICAL TRIAL/STUDY:
R(+) Pramipexole in Early ALS


TRIAL UPDATES:

February 2008

In the February 2008 issue of the journal Amyotrophic Lateral Sclerosis (see Publications, below), the investigators say the following:

The 30-person, nine-month study, there were statistically nonsignificant declines in the slopes of two functional rating scales.

In the dose-escalation study, all participants increased their daily (R+)pramipexole dosage to 100 milligrams three times a day. Blood plasma levels of the drug increased with dose increases. Scores on the ALS Functional Rating Scale did not change, but forced vital capacity (FVC, a respiratory measurement) improved.

In the open-label extension study, changing from 30 milligrams to 60 milligrams per day of (R+)pramipexole was associated with a statistically nonsignificant reduction of 17 percent in the slope of decline on the ALS Functional Rating Scale. The drug was tolerated well long-term at 30 and 60 milligrams per day.

In February, James Bennett Jr., M.D., Ph.D., at the University of Virginia Health System in Charlottesville, said the team is collecting functional clinical data in the 300 milligram per day study but that they don’t have enough data points to draw any conclusions yet. They expect to finish that study late this summer.

In their paper, the investigators say their findings support longer-term testing of higher doses of (R+) pramipexole as a potential therapy for sporadic AL i dont know how to start new post but hope this can help somebody got it off m.d sitr

 

[tdamess]

site
ss for spelling wrong in last post

 

[MtPockets]

As a former fireman myself, I know I was exposed to so many chemicals in the fires that my lungs were damaged permanently. I had shortness of breath quite often after some fires. Of course that was over 35 years ago when real men did not were Air Tanks into a burning building.:grin:
We learned the hard way, we could fight the fires much better with the self contained breathing apparatus.
I have a natural stubborn streak plus I'm aby-normal.