First, they need to start an IV line and give you fluids. You NEED fluids!!! It's possible you have a UA or kidney infection.

WARNING: They CANNOT keep steroids from you! If they do, you will already be going through a fast withdrawal of them. Solu-Medrol is not a substitute for the tablets you are already taking. You could have an adrenal crisis, which is life threatening.

They need to do an arterial blood gas (if they haven't already).

You have the RIGHT to have your meds. If they don't know what Mestinon is, they should look up Pyridostigmine Bromide, call your neuro, or look up MG!!! They have devices to help them—like a phone and a brain!!!

Stop with the negative thoughts. You aren't a FAKER! You have very real health problems and need appropriate care. And this isn't complaining. This is a situation where you are very ill and need better care!!!

Stop talking (unless you have to with doctors). Seriously. You need to lay still as much as possible.

I guess the doctors don't know that too much Solu-Medrol is not a good thing!!! It's time for IVIG or plasma. If they can't do it there, they need to send you in an ambulance (not yet) to somewhere that can. You aren't stable and you need to be. I'm not a doctor, but it's obvious that 1) something is making your MG worse, and 2) you need better meds.

Steroids can make MG worse before it is better. And they can make whatever infection you have worse (because you are immunosuppressed now).

What antibiotic(s) did they give you? Do they know the ones they shouldn't give you?! Quinolones, Ketek/Telithromycin, Erythromycin. Those are the worst ones.

I don't want you to become a medical mistake, Jane!

Do they have you on oxygen?!! Have they checked your O2? That's the very least they can do.

They should be monitoring your heart as well at a nurse's station. And if you aren't in the ICU, you're in the wrong place. You need to have constant monitoring. Duh!!!

Geez, do I have to hop on a plane and personally tell them how to take care of a MG patient?!!! Sorry, can't fly. But I would if I could! This is ridiculous.

I hope they will get their act together. Tests are fine. But you need basic care (such as fluids) right now.

Is there anyone who can be with you? Someone should be talking for you. Even if Mike calls them. Someone has to let them know that you need better care. Heck, have them go to Home and look MG up!!!

I hope you'll be okay! Don't stress out. Meditate. Be calm. Be your best health advocate. You are the only one you need to be concerned about right now. Take good care of yourself! I hope the doctors will, too.


Annie