Respiratory onset ALS????

[Sofia77]

Hello everyone! I’m a 26 year old female from Greece. I’ve been experiencing trouble breathing since May 2023. These past few months it’s become severe. Every day there are times that I feel like I’m suffocating and choking as if my lungs dont have the power to inhale or exhale. For this reason, I feel better when I lie down because my lungs feel supported and the symptoms arise mainly when I am standing up or walking. Also, I feel like I have to grab something in order to help me breathe because I feel like i have no strength to do so. I have been checked by a cardiologist ( ecg and echocardiogram) and by two pulmonologists (chest x-ray, chest Ct scan, 5 spirometries and 1 cardiopulmonary exercise exam) in the course of 1,5 years. All tests have shown up clear and the only thing I have been told is I have very mild asthma that is not active right now and could never explain the magnitude of those symptoms. Therefore, I’ve come to the conclusion that I have to visit a neurologist as I have some type of neuro disease,perhaps Als, as the heart and lungs tests havent showed anything.
I want to add that everybody has addressed this problem as psychological and I have tried anti anxiety meds for about a year but they havent helped at all.
I am really convinced that this has to besomething serious because it’s causing a huge discomfort. Are those symptoms reminding any of you of their own symptoms or a typical respiratory onset type of ALS?
I would like to send everyone suffering my greatest wishes and prayers.

 

[ShiftKicker]

Hello and sorry you are struggling with questions and no real answers. We do ask that people read here: Read Before Posting, as it outlines what ALS is, and what it is not. What you are experiencing is nothing like how ALS presents. The pulmonologists would have detected something neurological if that is what was causing your discomfort. As you've seen 2 and neither detected an issue there, you should trust that your symptoms come from some other issue.

So, while we can't help you with what might be affecting you, we can tell you that it does not sound like the onset of ALS.

Please take care

 

[Nikki J]

Agree with shiftkicker. Specifically, if you had respiratory ALS spirometry would have shown it and you said you had five. It would not be confused with mild asthma

 

[Sofia77]

Thank you for your answers. I was going through many posts earlier from people who have actually been diagnosed with ALS and it just seemed to me that with a respiratory onset, the first actual symptoms is trouble breathing. I just thought that this feeling of weakness in my lungs that comes with the suffocating feeling and the need to grab things in order to perhaps mobilize my lungs to function, is definitely neurological. Maybe ALS maybe something else..
Anyway, thank you!

 

[lgelb]

Resp onset with normal PFTs can’t be. Suggest returning to your PCP and considering endocrine, rheum, and other systemic explanations.