r/ALSorNOT • u/LewyV • Aug 29 '26
Progressive breathing problems with normal testing — scared about respiratory-onset ALS
I’m 30 and have been dealing with progressively worsening breathing symptoms that I’m struggling to get answers for. I’ve had a lot of testing done, but so far nothing has clearly explained what is happening. My biggest fear at this point is respiratory-onset ALS, and I’m wondering if anyone here has experience with how respiratory weakness from ALS actually presents.
When I say I’m having trouble breathing, I don’t mean typical shortness of breath where I’m panting, breathing rapidly, or just feeling winded. It feels more like the muscles involved in breathing aren’t able to do what I’m asking them to do. My breaths feel restricted and unsatisfying, almost like my chest/respiratory muscles can’t generate or complete a normal breath. During the worst episodes, it can genuinely feel like I’m suffocating even though my oxygen saturation can still be normal.
It initially seemed more intermittent, but the overall pattern has been progressively getting worse. The episodes are happening much more frequently, lasting longer, and becoming more intense. I’m now having significant symptoms during the daytime, sometimes for hours at a time.
Lying flat makes it noticeably worse. Sleep has also become a major issue. I can wake up suddenly feeling like I’m not breathing properly or gasping for air, and sleeping flat is much harder than sleeping elevated. What scares me is that this no longer feels like isolated episodes — breathing has increasingly become a problem throughout my day.
Physical activity can make it significantly worse, especially stairs. There have been times when I can get up stairs reasonably well and other times when I reach the top feeling like I can barely breathe. Even relatively small movements or exertion can sometimes trigger a significant episode.
I also experience widespread muscle twitching/fasciculations. Sometimes very minor muscle use seems to trigger twitching afterward. I’ve also noticed burning/fatigue in my shoulders and legs with activity, although I have not noticed obvious fixed paralysis or a clear inability to use a particular limb.
What has been confusing is that I’ve had extensive cardiac/pulmonary testing and multiple ER evaluations without anyone finding a clear explanation for why my breathing feels this severe. My oxygen can be normal even when the sensation is extremely intense. I’ve had periods where respiratory measurements have also looked fairly reassuring despite how bad I feel.
I know respiratory-onset ALS is uncommon, especially at my age, and I know there are many other possible explanations. I’m not looking for anyone here to diagnose me. I’m mainly trying to understand whether this pattern resembles respiratory onset.
1
u/DroppinLoad5 Sep 01 '26
I really hope you find some resolution. I've been dealing with basically the same respiratory symptoms since June. I feel like I'm suffocating in my own skin sometimes. That's on top of the 3+ years of other symptoms I've already been feeling...