Oh, Erin, I am appalled by the treatment you received! People can have worse care during a weekend, but that is no excuse to not do what they can or to allow a patient to die!

The fact that you couldn't even get a MIP to register is frightening. How is your breathing now?

There are many things they could have done.

1. Check your O2. An O2 is deceptive. They have to do it while you are moving as well as sitting.
2. Do an arterial blood gas. If they see "hyperventilation," they often chalk it up to someone being "anxious." What it really means is that your gas exchange sucks due to not breathing well!
3. Compare your pulse to your "normal" pulse. It goes up when MG gets worse.
4. If you had been able to conjure up a MIP or MEP, they could have compared it to your normal. HOWEVER, at the point of -21 MIP, it's time to consider a BiPap or vent. A MG patient can stop breathing at that point.
5. They could have kept you overnight. They could have checked your O2 while you were sleeping. It always goes lower when we sleep.
6. They can do a basic neurological exam, rating your muscles on the scale of 0 to 5 (0 is worst, 5 is best).
7. Depending upon all of the above, they could also have given you oxygen.

I'm concerned that you are doing so poorly that you couldn't even breathe in.

After you get better, you should call your neuro and pulmy and have standing orders for you in the future. And by that I mean EXACTLY what anyone should do for you (i.e., IV Solu-Medrol, oxygen, etc.), such as what tests and what treatments.

Do you have an oximeter?

The problem is that we can become so weak so slowly that we might not notice how bad we are.

There is no excuse for what they did. You have a chart. They could have looked up what has been done before OR they could have gone on the internet and figured it the he!! out. Good grief, is there no standardized care in hospitals for MG patients? No protocols? Do they have actual medical degrees?!

I won't moan on with my own examples. It happens to a lot of MG patients. But MG patients can DIE if they don't receive the care they need.

If you are doing poorly, go back in (via an ambulance if you have to). What if you weren't able to speak? Any instructions from your doctors should be in your chart AND at home to bring with. Some MG patients have a recording for a 911 call in case they can't speak.

This is serious. You need care.


Annie