Breathing issues questions???

RogerC53

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Feb 19, 2019
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DX MND
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08/2019
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I have recently been diagnosed with ALS/MND and currently having shortness of breath. It has gradually gotten worse over the last 3 weeks. I really don’t know if this is related to ALS/MND or something else. I will just be sitting and it feels like I just can’t catch my breath, like when you are really out of shape and climb some steep stairs. The shortness of breath comes on a little more frequently when I do lay flat on my bed. If I raise my bed it helps a little. I am also experiencing a lot more saliva in my mouth and have to spit it out. I do cough a little more than I use to but again don’t know what if any of this is related to ALS/MND.

Does this sound like complications of ALS/MND or something else? I am new to all of this and just don’t know what to expect.

If others with more experience could describe their breathing symptoms as they relate to ALS/MND it would help me a great deal.

They are scheduling some breathing test in December at Stanford for me.
I have an appointment in December with my specialist and have emailed him with my recent symptoms but he hasn’t gotten back to me yet.

Your knowledge is greatly appreciated,
Roger
 

nona

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I'm sorry, my friend, but this is all part of ALS. All of us progress differently and at some point we will all experience respiratory difficulties. I can't breathe on my back and I use a bipap at night and occasionally during the day time. I'm glad you have appointments in December ; maybe you could get in earlier? Saliva is also common and there are a few meds that could help dry you up. You could start with cbd oil, since you're in California. Speaking of, depending on where you live, the air quality from the fires could affect your breathing and make you cough.

You mentioned a specialist... Are you enrolled in an ALS clinic?
 

KarenNWendyn

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I think the pulmonary function tests will answer many of your questions whether the breathing symptoms are due to ALS. If your FVC and/ or MIP are reduced, BiPAP may help. Other things that can cause breathing problems would be reflux, especially if you have bulbar symptoms. PALS can get silent aspiration. The cough may be an indication that this is a possibility. If your legs are immobile, blood clots could be a concern. If you are recently diagnosed, that probably is not an issue at this point.

I’m a little reluctant to describe my breathing symptoms for a few reasons. One is that there can be multiple reasons for shortness of breath as noted above. Second, a PALS can have significant respiratory muscle weakness from ALS and no symptoms, or just headaches from CO2 retention, or fatigue. We also get quite a few anxiety-ridden visitors to this forum who do not have ALS but take stock in every symptom we list to build a case for why they believe they have ALS. And I don’t want to feed that.
 

KarenNWendyn

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Roger, I went back and looked up some of your previous threads. You’ve mentioned being diagnosed with a number of other autoimmune conditions including MG and RA. Some of these conditions can also be associated with breathing problems for different reasons than in ALS.

So your question and situation are actually more complex than someone with ALS without other medical conditions. I think the pulmonary specialist is going to have to help you sort all this out.
 

RogerC53

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Feb 19, 2019
Messages
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DX MND
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08/2019
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CA
Thanks for the replies and information, as you probably know your insights gained from your experience are very helpful for us just starting the journey.
Karen, yes my case is very complicated due to all of my auto immune diseases and my exposure to the biochemicals. This is why the process has taken so long. My doctor has been very thorough and patient. I try to be patient not one of my strong points.
Just trying to learn what is happening to my body and try to treat the symptoms as they come up. A lot to learn and I know I am resistant to the diagnosis.
Will try and set up the pulmonary test ASAP and meet with the doctor to determine the best course of action.
He has me on Riluzole for ALS and Plasma Exchange for my Myasthenia Gravis.
Roger
 

Kristina1

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Jan 26, 2017
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Don't discount anxiety either. Though shortness of breath comes with ALS, I had frequent episodes of shortness of breath when I was first diagnosed. After a few weeks they improved. The fear/distress/anxiety when ffirst diagnosed definitely exacerbated my shortness of breath.
 

KimT

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I have shortness of breath when GERD is acting up or when I am anxious.
 

RogerC53

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Joined
Feb 19, 2019
Messages
11
Reason
DX MND
Diagnosis
08/2019
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US
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CA
Had a pulmonary test and it was abnormal. The pulmonologist felt it was from motor neuron disease. She is starting me on a BiPAP machine as soon as possible. Kind of knocks my denial down. Still very hard to accept.
Seems like it’s getting harder to breath every week. See my neurologist in about 2 1/2 weeks. We are working with him to try to figure out my speed of progression,
Best to all keep fighting
 
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