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?

I love that. I think it is so unfair that in my field of practice you can't use those explanations. :mad:

Let's say a patient comes with anemia, and all the routine tests are normal. I then have to start scratching my head and start doing much more elaborate testing until I find the cause. :Scratch-Head: (or not...)

Wouldn't it be so much easier if I could say- I think it is unconscious underlying stress that you are not aware of, which is making your body make less red cells. ;)

Or- I think you are really not putting enough efforts into making better red cells. I am sure you can do better. :winner_first_h4h:

I could even write a nice letter to the GP taking care of him suggesting emotional support and that everyone involved will be positive. :)


On a more serious note-

The proper respiratory tests that should be done, at the least, are:

routine spirometry (which measures the volumes your lungs can generate and may be completely normal).
MIP/MEP (which measure the force your respiratory muscles can generate against resistance)
MVV-which measures your respiratory muscle endurance. It is the volume you can create by breathing as hard and fast as you can for a minute.

A sleep study with measurement of oxygen and CO2 (this can detect subtle but significant abnormalities which will not be apparent during waking hours).

There are other more elaborate tests that can be done, if those tests are suggestive of a respiratory muscle problem, but do not give a definite answer.
But, those require special expertise and equipment, are not done routinely in most places in the world and their accuracy is not agreed upon. (as opposed to the SFEMG which we all know has a accuracy of 100%).

Thanks Lawgirl for sharing

When I read your post I thought of 3 more things and wanted to edit them into my list, including breathing disruption similar to yours at night (but the edit time for the post has expired)

• Prolonged use of voice with volume gives stiffened lung sensation as if diaphragm has turned into 2 wooden planks!

• ´Stinging´ sensation just around the sternum

• Headaches from breathing disturbances upon waking

Anacrusis

Thank you Alice,

Your expressive post with equally expressive icons gave me the first smile of the day!

It is also extremely useful for anyone to have a list of breathing tests specific to MG along with them to a local hospital, at least from my experience it is quite likely that I am going to need that list once I get there.

Some years ago I ´lost´ out on being a proper mother for my son from the ages of 2-5 precisely because a doctor didn´t think to scratch his head! I might otherwise have been able to dress my child, play with and hold him more often.

In the end, it´s never really been doctor v. patient - they just haven´t known – I just haven´t known. (I also did not know what the concept of fatigable weakness was until the 3rd year of having it.) That said, I have learned more about people than I have about any disease in the doctor´s office.

That little SFEMG test that you speak about...:o (the one that can be anything from zero to a 100% accurate! :eek:) is just around the corner. I have a lot at stake here, except for one small thing, my sanity!;)


Anacrusis

I was thinking some more last night about what is described about breathing consciously instead of automatically. That is a perfect description of how we end up having to accept what is less than normal. When you have muscle stiffness you go to a masseur. …..when you´ve pulled a muscle – you go to a physiotherapist - but when your breathing muscles are quitting on you you are just left to think about and work through the issue by yourself!!!!...Nice!!!

Anacrusis

I get all of the same symptoms, quite often also (I am on IVIG but am not responding to treatment). I always start my day like a "normal" person but then often by 10AM I am taking 3 small inhalations for every exhalation and I get terrible chest pain across the sternum and along the ribs. I lose my voice over the period of the day, and start to get excessive secretions in my throat because I can't swallow my saliva (I'm not on mestanon).

And yes, Lawgirl, I also wake up gasping for air and some nights have difficulty falling asleep because I can't get comfortable.

Also I notice that sometimes I am so tired I skip breathing and hold my breathe because consciously breathing is exhausting.


It makes me feel better to know that I am not the only one with breathing difficulties on here- sometimes it seems like most people just have issues with their limbs. It is extremely frustrating and scary that I can't breathe sometimes and I never know how to handle it because I have been hospitalized 12 times this year for being in crisis and the local ER never quite handles it well.

Do you have a pulmonologist? Why weren't you given a Biapap?

Alice, would you mind changing your specialty to MG and moving to Georgia?

alice md;

Can not find Biapap in Medical Dictionary. Can you show me where I can find it.

Thanks;

scrubbs

I think this site gives a nice explanation.

http://respiratorytherapycave.blogsp...-bipap_04.html

Alice my pulmonologist is a wonderful older doctor who doesn't believe that I have MG, but rather all this is "anxiety". He is the director of pulmonology at my local hospital and no other pulmonologist will see me because they won't "steal" a patient.

Although I love my neurologist, I can't stand her assistant- I can never get a phone call back even to make an appointment. I am completely frustrated and extremely angry as this has been going on for months.

Well, I am already an MG expert ;)
I don't think many MG experts get to study it 24 hours each day, and had the opportunity to personally experience nearly every possible common, rare and extremely rare manifestation of this ***** disease. :eek:

If I understand correctly you were hospitalized 12 times because of respiratory crisis. How did they make this diagnosis? and on what grounds does your pulmonologist disagree with it?

I tend to have periods of weaker, swallower breathing each day between 11 AM and 3 PM. Then it improves gradually, reaching a "no worries" level by 5 PM and continuing good until bedtime. I take 60 mg Prednisone at 8 AM and 60 mg Mestinon at 8 AM, 12 noon, 4 PM, and 8 PM. I started my drug treatment only three weeks ago. I have no explanation for the weaker breathing between 11 AM and 3 PM. I finished a round of 5 days of IVIg three weeks ago, so that should have nothing to do with the breathing situation now. My guess is that the big dose of Prednisone in the morning is in some way effecting breathing strength. My Neuro did say that Prednisone may make some MG symptoms a bit worse before they get better....so, I'll hang my hat on that, I guess. Trying not to overthink things right now.

I think this is a very reasonable explanation and also a very good approach.
Just keep an eye on that and let your neurologist know if things get worse.
It sounds like he is on top of things.

Also, it is sometimes helpful to take the prednisone early in the morning (around 6:00 to 7:00 AM which is the normal time for your cortisol levels to be increased). it may decrease some of the side-effects. I assume that you take it later in the day. And also taking another dose of mestinon to cover the peak levels of prednisone may also help to some extent. Some neurologists give prednisone on alternate days, and this may possibly also help.

Hope you feel better soon,

These words almost jumped off the page at me.....
I went a whole year thinking I was the only one on the entire planet with this exact same diurnal variation of breathing difficulty. Thanks SO much PhotoBug for sharing your experience on this thread….

Anacrusis

A quick question.......

Do you notice it is much harder to breathe through your nose than your mouth during periods of heavier restrictive breathing? (The reasons for that happening I guess would be obvious ones) It does amaze me how you can survive with sometimes virtually inert lungs over a period of many years.......

Anacrusis

Status:
Working on finding allegiances in my own country´s health system
Working on making an appointment with a highly experienced pulmonologist abroad

Fireplace bellows!
 

The extra effort needed to take air in through the nose is like the extra effort needed to pull air through the nozzle of a set of bellows with a blocked valve!!! That´s what it felt like during all those episodes of restrictive breathing…..

http://en.wikipedia.org/wiki/Bellows

:)

I am 3 weeks out from my IVIG (usually get it every 2, but holidays make scheduling a little harder I guess! ick).. I am sooo short of breath by the end of the day and it really does cause some pretty darn good chest pain.. Yall have this?? It's just like an elephant sitting on my chests, or like my abs (which are also weak) are detaching from my lower part of my ribs (i had that sensation when pregnant - ouch).. anyhow. now that I am sitting down resting from my day it is better but , it is so anxiety provoking to not be able to breath well!!!

This thread is bordering on getting medical advice from an Internet forum. It's great that we can help each other with our experiences but only a doctor can give us answers for our own specific needs. We all have individual health profiles and it's often not only MG that is a part of that.

Also, some posts may get lost in a long thread like this. It might be a good idea to start new ones if you need specific help. I personally find it hard some days to sift through long posts like this. Too much reading while having double vision.

Anacrusis, I hope you found a pulmonologist to help you. Neuros are out of their specialty on breathing issues.

PhotoBug, There are a lot of reasons for why you might get more tired during that time of day, like diet (carbo or coffee crash), low thyroid, insufficient cortisol and lots of other things. We are mammals and our bodies do "want" a nap in the afternoon. I hope you'll talk to your doctor about all of this, since you just started meds.

Annie