Thanks, Alice. Yes, the task is daunting but the idea brilliant. And necessary. I have some things to add at this time.

MG Breathing "warning" Symptoms:

Sudden shortness of breath episodes
Chest wall muscles cramping or spasming
Generalized weakness that progresses to muscle cramps or spasms anywhere
Waking up choking


Breathing tests:

MIP and MEP: The highest number is always given, even when a series of four or more are done. That does not give a clear enough picture of what is going on with the patient. Numbers that trend downward are as important as a single absolute number. This is true of the other tests but none as important as MIP and MEP since MG is all about weakness that gets worse with repetitive activity. Duh.

Arterial Blood Gases:

Neurologists AND pulmonologists often do not understand the significance of this test (or non-significance too), particularly when it shows hyperventilation. And then there are the doctors who do it while someone is on oxygen, which skews the results.

Don't ever mock your patient and say they must be anxious because their ABG tests showed they were hyperventilating!

Myasthenic Crisis:

DO NOT put an MG patient in a regular unit of a hospital. Due to the unpredictable nature of the illness and weakness while in an imminent or current myasthenic crisis, they need to be monitored in an ICU setting.

Standard treatment while in a crisis is not adhered to. Plasmapheresis is usually given though not always. Some patients can't have it but it should at the very least be the first "offer" of treatment. Treatment is a complicated issue since some people with MG do better with IVIG than plasma.


I'm sure I'll have more ideas, Alice. If you want this to "look pretty," I do have a Masters in design. When I used to work, I did a lot of marketing and design in the health care field. If you need my somewhat time and muscle restricted help, please let me know.

Please thank your colleagues for doing this.

Annie