Dear Annie,

Thanks for this very helpful message, although I'm very sorry to hear that apparently you also had some difficult ER situations in the past. My goodness. Why oh why? It is hard to understand.

I still feel bad today. I do have a home pulse oximeter. For reasons I don't understand, my readings are within an acceptable range, even though I feel terrible. However, if they do an ABG, that shows problems at times like these. As you mention, my readings also change when I walk or go to sleep at night.

It's more than the breathing. It's the severe leg weakness, difficulty walking, difficulty swallowing, increased difficulty with vision. I think some other form of treatment is needed.

The idea of having standard orders is intriguing. I wonder if they would consider that? I will ask them. It really makes me both sad and frustrated to think of this happening to other MG patients as well as me. We need better care for MG patients.

Thank you again for your message, Annie.

With appreciation,
Erin