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

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. (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.

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... (the one that can be anything from zero to a 100% accurate! ) 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.