Bothersome breathing
 

What is the difference between breathing problems resulting from stress and those resulting from MG?


I´m thinking that if you have MG breathing problems, wouldn´t you feel the discomfort out to the side of the ribs where the intercostal muscles are and slightly lower down?
Mine feels like it´s way too high up near the sternum area and where doctors previously have put it down to some underlying stress factor.

I just went back to work after a really long holiday and now have to project my voice 4 hours a day during an 8 hour work day. So I know this is when it has all started.

Things like......

• Quite often I catch that my breathing is so shallow that the lungs are barely moving

• This week I had to avoid lunch with work colleagues since eating and talking at the same time was impossible

• Last year I sometimes could not finish a sentence and now there are times where I can not start one.

• Fluctuating weak cough here and there and problems with breathing ´in´ but not out.

• Avoiding heavier necklaces and tight clothes on upper body which feel tight only when the´breathing in´ problems are present.

• 2 days ago I spent 4 hours of working way harder than normal to get the air into my lungs. I took Mestinon for some double vision I was having and by default the breathing improved dramatically - but I would really need to try a few more times to be certain it was the Mestinon that did that.


Do any of you have anything similar with your breathing? Or does it seem to be more fitting to a stress profile?


Thanks

Anacrusis

This sounds just like the problems I have breathing and I have always related it to mg. I retired about 2years ago, but prior to that I had to do a lot of talking at work and without the mestinon, I wouldn't have been able to continue talking. I have some problems breathing these days, but mestinon and rest take care of them.

Hope you find what works for you (but sounds like you might have already found the solution)

I hate to say it, but everything you've described describes my MG related breathing issues. I initially described it as an elephant sitting on my chest. My auxiliary resp muscles have to work overtime to breathe.

For me, mestinon does not usually help my breathing, unfortunately. Which is why I am going on prednisone. :-( Not happy about that, but I have to breathe.

I had some cardiac issues several years ago. When that got better, I continued having shortness of breath. I guess it was MG all along. I have noticed that sometimes I breathe too shallow. I have found myself not breathing 3 times. Twice it was only for a short time. Once I passed out. I had been riding my horse. Made for a pretty hard landing.

The only way to know for sure if breathing problems are caused by respiratory muscle weakness is to do appropriate respiratory tests.

When a person experiences breathing difficulties it always leads to some degree of anxiety. Our body senses very quickly that there is something wrong with our ability to get rid of CO2 and/or get enough oxygen.

A patient with a pulmonary embolism can look like he/she is having an anxiety attack if you do not suspect it. The same is true for asthma, heart failure or any other problem leading to breathing impairment.

But, certain signs and results of tests direct you to the correct diagnosis. Many times reassurance and a calm environment can lead to significant improvement even if there is a significant medical cause, so this too can be miss-leading if you rely on that.

Patients with severe respiratory muscle weakness may appear disproportionally calm because they are unable to show their distress.
This can be very miss-leading for those who are inexperienced.

So, if you are experiencing even relatively mild breathing difficulties it is important that you consult a pulmonologist (with some understanding in neuromuscular diseases) and have a proper evaluation.
If all your tests are normal (including respiratory muscle strength and endurance) it is not likely that your breathing difficulties are due to MG.
If they show some abnormality it may help in leading in the right direction.

They can also do those tests before and after you take mestinon.

Thank you.……

I am always calm when it happens, and it has never yet correlated with stressful periods/days in my life. What has been implied in the past is that since I´m not outwardly showing any anxiety then the onset has to have something to do with unconscious underlying stress that I myself am not completely aware of.

Anacrusis

This is really great to know for the visit to the pulmonologist:
PS Thanks for the private message from another member encouraging for MIP and MEP to be taken at the same time as the other tests.

Juanitad, Kage & Celeste,

Just out of interest, would you say that your breathing returns to pre-MG normal after the breathing episodes are over and medication is taken?

Or have you found that your diaphragmatic muscles are always somewhat on the weaker side since contracting MG?

Cheers..

Anacrusis

I'm not sure. I don't pay attention to breathing except when I am out of breath. This is when I exercise or am tired, but that could be caused by anything that would cause the problem

And to Alice, yes I should get tests done about the breathing. I am just totally burned out on the doctor merry-go-round. I am so tired of tests with no answers and doctors that don't care, I would rather stay home.

I am wondering because when 3 days of laboured breathing is over then my breathing goes back to ´normal´and that ´normal´ is just shallow. I don´t think it has been how it´s supposed to be for quite a number of years.

Celeste, I´m sorry you have had those experiences.

One day I will have to tell you about my visit to the ENT specialist at my local hospital who was an hour behind. I found him sleeping on his desk and wasn´t actually sure if he was still alive or not!

My first thought about getting to a pulmonologist is that there are no private ones where I live which means you HAVE to get a referral to the hospital which means if your timing is out and you get a negative test there, then your credibility as a serious patient is greatly diminished and your chances of then getting a second referral are also greatly diminished.

Thanks

Anacrusis

I get everything you've described.

The worst bit for me is when I wake up from my sleep because I haven't breathed for a while, and I have to consciously myself breathe in and out when at times it's so hard to make my diaphragm move enough! Does anyone else get that?