Well, Tracy, you know when you are in a crisis when you are as bad off as you are now. I didn't want to define it as a crisis because I didn't want to scare you. Not that you aren't already scared.

Your doctor's are supposed to know that too.

You couldn't squeeze that doctor's fingers. No muscle strength = a crisis.
Your MIP was -30. Below -40 is a crisis (usually).

As much as doctors want one, there is no "exact" algorithm for defining a crisis. What is one person's crisis is not another's. Yes, there are basic guidelines but each person is different.

Don't use counting as an example. Doctors are odd that way. Talk about not being able to do anything due to weakness, about not being able to breathe in or out. They are the ones who aren't doing what they should do, like arterial blood gases, FULL pulmonary function testing instead of bedside spirometry, overnight oximetery, etc.

Again, why no Mestinon prescription. That is something your neuro could've done today. Call them back and get one called in.

And a Tensilon test in your condition could make you worse. Duh, doctors.

How far away is the bigger hospital? How about an ambulance ride there? You need more help than the IVIG.

You have to look at your situation in very basic terms. If you don't get help, you could stop breathing and die. So I think it's time for help, no matter where you get it.

I am so sorry things are this bad. But don't give up hope! You are this bad because you've gone so long without sufficient treatment. Please don't wait for help.

Annie

And quit typing, okay?!!!! Just sit in a hospital bed and read, without holding what you're reading!