I get exhausted even thinking about this topic. It makes me quite angry.

A nebulizer is for asthma. Or if you have a respiratory infection. I take it that you have neither of those things?!! It certainly won't help MG.

What the heck is "not too bad?!" Do you have copies of the ABG? If not, get them.

This is a quote from "Neuromuscular Junction Disorders: Diagnosis and Treatment" by Dr. Matthew N Meriggioli (Univ. of IL), Dr. James F. Howard, Jr.(UNC), and Dr. C. Michel Harper (Mayo).

“Arterial blood gas measurements are a relatively insensitive measure of impending respiratory decompensation in MG since the initial changes are consistent with hyperventilation and are usually attributed to anxiety. By the time CO2 retention occurs, the respiratory muscles have already begun to decompensate.”

In other words, the chest wall muscles are already FAILING at that point. And a NIF at -15 is time for BiPAP or intubation, as you obviously know being an MG vet.

I sound like a broken record, but what you need is a very good pulmonologist. They need to coordinate care WITH a neurologist and come up with a plan for when this happens again. An ER doctor would not dare disagree with a treatment plan already set up. If they did, well, they shouldn't be a doctor, especially not one in an emergency setting!

And you should have an overnight oximetry done. Why? Because your O2 while sleeping could be dropping dangerously low. Hypoxemia is very hard on the heart, brain, and kidneys. You can't only go by how it is while you're awake. Silly doctor.

I'll bet it was, as you said, going off of the other immunos that set you into a crisis. Don't do that again!!! Any drug such as those need to be gone off of slowly, not only Pred.

The only thing you should be concerned with is your health, not an ER doctor's level of misbehavior or ineptitude. And having a neuro and pulmy come up with a plan so that this never happens again.

I'm concerned that you are not stable right now, and anything could send you back into a full blown crisis. Breathing is the main issue, and only a pulmy can help you with that (NOT a neuro).

A two hour trip during an MG crisis is too long! You have to work with the hospital close to you. You can always ask for a transfer and be taken there via an ambulance (with oxygen, etc.).

PLEASE find a good pulmy and get evaluated. And do not overdo. I'm really sorry for what you went through.

Thanks, Kathie, for putting up that info. I see that MGFA is lacking in any substantial pulmonary info though.


Annie