Regarding the atrophy of the respiratory muscles

[Jar Ko]

Hi. I have a question about the atrophy of the respiratory muscles and the related breathing disorders - is it possible that with the above problem the patient can take a deep breath in a controlled / forced manner and at the same time have shallow breathing during the day and hypoventilation during sleep?

 

[Bestfriends14]

Are you in the diagnostic process currently? What doctors have you seen and what brought you to the forum? To answer your question, in my husband's case, no, he could not take forced/controlled breaths when his diaphragm muscles became involved. His breathing got worse and worse and continues to do so. He is on NIV nearly 24 hours a day.

 

[affected]

Nope, the muscles work, or they don't.
A bit more context will help, and I suggest seeing a doctor as breathing issues should be checked.

 

[lgelb]

Of course -- hypoventilation during sleep with normal breathing during the day generally relates to sleep apnea. But that is not ALS. Shallow breathing during the day can relate to anxiety, stress, obesity, and many other conditions, including Covid.

As Tillie says, any issues with breathing at whatever times of day or night should be checked out by a doctor.

 

[Jar Ko]

My situation is quite complicated. I am in the process of making a diagnosis - but everything is so long, that is why I started to search and analyze on my own. Because of Covid, I have a problem getting to a pulmonologist.

In general, what is happening with me has a bit of a substitute for MND, but I am not entirely sure - global muscle atrophy and weakness, fasciculations visible on the skin, and EMG, which was found in a few months ago, but ultimately test was classified as "normal". Another visit to the neurologist and examination in about a month.

Unfortunately, for a few weeks my condition began to deteriorate - my torso muscles weakened, I started having problems with maintaining balance, and for a few days I have had problems with breathing. I am quite reasonable and I realize that it may be psychosomatic, but I was under increased stress many times and such things did not happen - shallow breathing at rest / at night (which results in quick fatigue), slight dysphagia and areophagia. Initially I thought about hypoventilation, but my saturation is ok - even at night - which rules out this phenomenon. My breathing has been for some time more abdominal than thoracic, but due to abdominal muscle weakness, it feels as if it has become blocked / incomplete. I am able to draw deep air into my chest when I force myself to do it, but when I try the same through the abdominal route, there is a problem - as if something is blocking the diaphragm (?). As a result of these problems, for a few days I wake up half conscious, after getting out of bed I have a dizziness that lasts to several hours.

I am not writing here to diagnose myself - I am just analyzing things and want to understand what is happening and in general it looks like breathing and possibly swallowing problems are starting to get worse as a result of the weakening/atrophy of the trunk muscles. I suspect that in ALS / MND the degradation in this area proceeds over a certain period of time rather than overnight, and the above-mentioned "the muscles work, or they don't" refers to the final phase of this process.

 

[affected]

If we say that isn't how ALS works, that doesn't mean it is psychosomatic.
You need to work with doctors, even if there are waiting times.
You truly won't figure this out by google, you don't have any medical background to validate and interpret the stuff you read against the stuff you are experiencing.
That's all we can say - there could be any number of genuine medical issues happening, but ALS doesn't happen this way.
All the best, please don't push it with us as that's all we can say.

 

[johnny5]

Not to discourage you, but the number of possible conditions is huge.

A lot of folks here have gone through high stress trying to figure out what was wrong with them. Only Doctors can really do that, but understanding the road ahead really helps to waylay some of that stress and anxiety. It seems to be common that humans imagine the worse possible scenario, not sure if its like your fight or flight instinct that brings it on, but education really helps.

This is a pretty long paper, but it can give you an idea of what a professional would want to look at before ruling in ALS. Remember, no test can tell you that you have ALS, it is a diagnosis of ruling out everything else.

 

[Nikki J]

It is important to remember that it is not just ruling everything else out. The rule out process in ALS is something that happens once certain criteria are present. Taken to extreme a perfectly healthy person would have everything ruled out. Would they then have ALS? Of course not. There are any number of human conditions that are hard to diagnose. Finding doctors who are excellent diagnosticians is the best bet

 

[lgelb]

Normal sats do not rule out hypoventilation as can occur in sleep apnea and related disorders. Your body typically maintains normal sats until O2 deficit is severe. But you are making suppositions. Pulmonary testing, which can be available before you see a pulmonologist, can provide you with facts. With a normal EMG and evidently a lack of clinical confirmation of the atrophy and weakness you report, it is hard to see ALS at all.