I just had a discussion with my husband about what it means "life threatening"

I explained to him that the whole idea of modern medicine is to be able to recognize signs that put someone in danger. you don't wait until they actually die or have irreversible damage. you can rely on historical controls who were not treated and what their outcome was. and any situation in which there is a chance of mortality of significant morbidity which is above 10% requires emergent intervention. this is what ERs are for!

Also, each sub-specialty has its own data base and knowledge. I reminded him of how one of my patients came to the ER with fever, and I had to call the resident a few times to make him understand that for a patient with chronic leukemia this is an EMERGENCY. before I called they treated him as just another patient with fever, even though they knew his medical history and saw the results of his blood tests. He was hemodynamically stable, alert and oriented so not someone they triaged on the top of their list. they didn't realize that such an immunocompromised patient could crash within hours if not treated adequately, even if he lacks any ominous signs of a severe infection.

Significant respiratory difficulties in a patient with MG are a similar emergency and sending a patient home like that, without making sure that they have adequate follow-up and care is irresponsible and shows of lack of knowledge of those involved. I am not blaming the ER residents for not knowing enough about a rare illness they don't often see, but the neurologist should have been much more involved, asking for the results of tests and making sure that proper management is instituted. just like I was involved with my patient.

I think you need to urgently find a neuorlogist who has a good understanding of this illness, and sees it as his responsibility to ensure your care in the ER, and not leave it up to them to make such decisions. It may also be a good idea to find a pulmonologist with a good understanding in neuromuscular diseases. the criteria used to assess respiratory status in the common disease they see in the ER on a daily basis (such as asthma, pneumonia, COPD) are very different then those used to assess the respiratory status of patients with neuromuscular diseases.

when I was a medical resident I was scolded by the attending in the ICU for failing to recognize the respiratory deterioration of a patient with neuromuscular disease. He explained to me that such patients may not look distressed and can have normal values of blood gases and even some respiratory parameters until very late in the game. and it is imperative to repeatedly measure their respiratory reserve.

(I did not know then that this physician, and this knowledge will someday save my life. but, this is another story).

bottom line, from what you say, it does not seem you should trust their medical judgement at this point. giving advice like that in an internet forum is very hard, and I may be wrong, but I think you have to keep on fighting to be seen by someone who really knows this illness and its various manifestations.