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Sequoia

Senior member
Joined
Sep 19, 2010
Messages
841
Reason
PALS
Diagnosis
08/2010
Country
US
State
Washington
City
Seattle
Hello folks, I have a question. My resent breath test ( not for alcohol, :roll: lol) showed i am below normal while lying down, yet I also have had asthma issues. When ALS breathing issues start, is there alot of coughing involved? I feel like my lungs are irritated, and when I am eating I get this tickle cough in my throat.

I am going to see a lung specialist on Friday and I hope he will listen to me and help me figure this one out. If it is an asthma flareup, that would make the breath test lower.
Anyways, if any of you have coughing with lung onset, let me know. And those of you who have asthma, how do you tell which is which?:confused:
 
You have done the best thing you can do is going to a lung specialist. If he does not mention it make sure that he does the oxygen test (overnight) where they put the monitor (finger BP tester) and a small machine to measure your breathing. Take one step at time and don't diagnose yourself. Sometimes it can cause more stress than is needed.
 
Hi,

I do not know about asthma, but in my partner's case respiratory issues associated with ALS started as shortness of breath, frequent night time waking (due to low 02 and high CO2 levels) and general tightness in his chest. A full sleep study, as mentioned above, would provide fuller picture. If your FVC (Forced Vital Capacity) was above 80% then you would be within normal range, and around 50% would call for a use of non-invasive ventilator.

What you describe (without knowing symptoms of asthma) sounds more like something associated with bulbar symptoms. I am sure others will give further information.

All the best, Dani
 
Have them consider acid reflux also....I know that sounds strange, but it turned out that my asthma-like symptoms were due to this problem.

- Jerry
 
Thanks Appollick, Danijella, and Bad balance! These are good things to bring to my lung specialist. Especially the overnight test, to see what is really going on. And yes, maybe the coughing is related to throat muscles weakening, when I eat. Or maybe acid reflux? It will definately take a specialist to sort through all this. I will not second guess him, or I would drive myself crazy. Trust is the way to go.
 
I have asthma and my lungs have significantly reduced function from ALS. No, not the same symptoms. My lungs don't expand fully, breaths are smaller but I don't have coughing nor wheezing from ALS. When my lungs are at their worst, It is more difficult to draw air in. With asthma I find it difficult to blow air out. I find the effects very different.
 
Thanks rm, that is a very clear distinction. How long have you had breathing problems? I dont know if this is the beginning of the end...or how long.

I think doing the sleep test will tell me if its both or not. I just do not want to miss the peg opportunity because of confusion.
 
Hi

I am not diagnosed with ALS but I have breathing issues and asthma. Latest PFT wasn't great. While an overnight monitor will tell you your oxygen saturation, it takes blood gases to see of you are retaining cl2. Your pulmonary doc will likely order them done...at least mine did.

Obviously if your saturation levels are dropping, you will need 02. I can not breathe lying flat at all. My lungs are now very gunky but I understand that is normal with my cpap.

Hope you can get it sorted out. A home 02 sat machine is only 30 bucks.
 
Sequoia,
I'm 22 months past initial symptoms. My fvc was 82% about six months ago, and my breathing felt fine. Three or four months ago I noticed my cough was barely strong enough to clear my lungs. Two months ago I had a sleep study wherein my oxygen level dropped to 86%. I've been sleeping with a bipap since, and now sleep much better also feeling better when I awake in the morning. My nurse says air velocity is significantly decreased in my lungs. I'm on hospice expecting to fall within the 28-34 month range that trfogey suggests as the norm for life expectancy.

This is likely more than you asked to know. I Hope this helps you some and I hope your day is a good one.
Randy
 
Randy, thank you, as I need to see all this realistically. It puts me at rest that I have possibly 2 more years....but then there is Rox, who had her bipap and peg and is now dying within only a few months. This disease is like Russian Roulet....but I want to have the hope of 2 more years, or so...time to prepare to meet my Creator. It is what it is! I am going to have a great day, one day at a time. Thanks!
 
let us know how it went please
 
You bet I will...my appointment is this coming Wednesday. Thanks! I pray the doc will do a thorough job and not just jump to conclusion from my last breath test. But of course he has to take them into consideration too...the problem is I dont feel short of breath, or maybe it is so gradual I havent noticed it. I do not wake up with a headache, but i do feel a over all tiredness. Whatever the lung doc says, I will do, but I hope he will just listen to me about the asthma.
 
Saw the lung doc today and he said my breathing wasnt that bad, probably a just a bad breath test...however he did suggest i get the peg soon. He thinks that the coughing I have whenever i eat something is tiny aspirations. And since I have the bulbar symptoms coming on in speech, and I did aspirate once big time, he thinks I should go ahead and get the peg. So I am going to see a GI doc next week and then get the surgery.
I also am going ahead and get the bipap so I have plenty of time to get used to it before i really need it. My scores were low enough to validate getting one.
Thanks everybody for your support. I'll let you know when the peg is scheduled.
 
best of luck and well wishes to you Sharon. you can do this- i have faith in YOU
 
Hello there I was waking up coughing before I was diagnosed and it was very irritating. I joined the army in 2004 and started having symptoms about dec 05 jan 06. I never deployed yet I was diagnosed on October 16th 2007. My unit deployed 4 times before I was unable to perform job duties. One of the first things I did to help the cough was get my uvula removed. It was a temporary fix. If you are having asthma issues along with als and you are not a smoker or have copd don't be suprised. There are things you might be able to delay the inevitable however you will need to get a ventilator at some point sadly. The best advice I can give you is stay positive about things. There is more to it than just als. I wish you well.
 
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