Wow, Tracy. No arterial blood gas? They didn't admit you? They really don't know what they are doing. And rest some and you'll be fine? Yeah, right.

Do you mind me asking where you live? Is it CT? Maybe someone can refer you to a neuro who does know what's up.

I don't feel right giving any drug advice. What dose of Mestinon did they say to take? 30 mg.? 60?

There are two things to adjust with Mestinon: Dose amount and dose frequency. Since they said to only take it three times a day, if you take it more often, you'll run out sooner than one month. You need to call your neuro and have him direct you! If 60 mg. of Mestinon is like taking water, then he needs to discuss taking it every four hours four times a day or more, for example. Dosing is different for everyone. And more (a higher dose) is not always better.

Until you get used to the drug, you may need to be on smaller doses but maybe more frequently. Again, don't make changes without speaking to your neuro.

I'm sorry it went so bad again. I think a conversation with someone in charge over there would be a good idea. Maybe give them some info on MG. Sometimes that may not go well, though but you do need care that is better than what you got. And IVIG is NOT what is usually given in a crisis or near crisis. It's oxygen, bi-pap or plasmapheresis. IVIG is sometimes given but not usually due to the chance of side effects.

Taking Mestinon before bedtime is a good idea. If you are tolerating it fine, then it will help recover some muscle weakness. I wake up in the middle of the night to take it. My body "knows" when it runs out.

Are you seeing your neuro on Monday? They can squeeze you in, you know. You have to grease the wheels and make it happen. Like I said before, you have to not do anything at all until you get more help. It may take awhile for your body to improve on Mestinon. It's been a long time since you had sufficient amounts of acetylcholine.

Don't wait for people in an ER to offer you anything. You have to DEMAND a wheelchair and someone to wheel you around. You have to DEMAND oxygen. How low was your O2? You seriously have to be assertive about your care. Really sad but true. Say "I can't walk." Say "I can't breathe." You have to define your situation in very stark, simple terms.

I think you need to look at home IVIG. Maybe subcutaneous IVIG that you can do yourself. A nurse comes to your home to show you how to do it. Then you won't have to go out!

And you may be so bad off that they have to consider immunosuppression like Cellcept or Imuran.

I wish I could do more for you. It's very scary to be so bad off. You have to stop doing anything. I hope you get better on the Mestinon.

Annie