Jana,

I went over it briefly. Overall it is a very good review, but it is outdated.
There has been significant progress in non-invasive ventiliation over the last 6 years. (fortunately for me, fully paralleling the deterioration in my respiratory function ).

So, there is probably no longer any need for early intubation, rather early institution of non-invasive respiratory support. In fact in makes very little sense to intubate a patient with an illness causing intermittent respiratory failure, when this is now avoided in many patients with ALS.

I personally find it ridiculous that patients with sleep apnea can easily receive proper non-invasive respiratory support, whereas patients with myasthenia have to jump through a zilion hoops for that. (unless they are fortunate enough to also have sleep apnea).

You are right that you can die from untreated respiratory complications of myasthenia.

When one of the technicians reviewed the data from my respirator card one time, he said-well, you only had 15 minutes over the last week in which you were unable to breath on your own.

I said to him- that is true, but what do you think would have happened if I didn't have my respirator with me during those 15 minutes? you don't need more than 4 minutes of not breathing on your own to develop hypoxic brain damage.

It was also true that on that same day, a few hours later, I was able to go to work. Had I not had my own respirator, I would have either died at home or been intubated in the ICU for who knows how long.