Tracy, Have you been talking a lot? Crying? Sometimes it's activity making a muscle group or groups worse but sometimes it's simply MG being unpredictable. Can you swallow? An inability to swallow is an emergency.

If I socialize, my tongue/jaw can cramp up for the next week.

Even though you're on Mestinon, you still have to be extremely careful. It is probably going to take MONTHS for you to get better due to how long you went without meds.

Of course it's the weekend and you probably don't have an urgent care center close by. I'm not talking about the ER but you may have to go there anyway. Sometimes it's something like a med or a thyroid condition or an electrolyte being off that needs to be checked.

Look at your face in the mirror. Can you smile? Is there one-sided weakness (yes, to check for signs of a stroke)?

And Mestinon is kind of funny. What if you have really weak trunk muscles, for example, and you dose Mestinon to make those muscles stronger? Well, your muscles that have been just fine on 30 mg. may feel overdosed on 60 mg. I am by no means saying you should change your medication!!!! I am simply trying to think of things that might be going on. How do those muscles feel in between doses of Mestinon? Are they worse or better?

Don't freak out. Think carefully about what you've done in the past couple of days that could have weakened those particular muscles more. They are referred to as the "bulbar" muscles.

You should give your neuro a call if things get worse. Obviously you are still on the verge of an MG crisis. You may be for quite some time. It's not fair but that's the way it is. You may need more IVIG, more often or need to add Prednisone on a short term basis, like IV SoluMedrol in the hospital for a couple days and then tablets. Although I'll bet you are one of those patients who may get "hooked" on Pred and that may make your infections worse.

You are in a bad situation right now. Can you tell me what antibiotic you are on at the moment? That may be playing a role.

You can try to put a cool washcloth on your neck and jaw. Sometimes it helps to sip on cool water. You can get a neck brace for your neck to rest those muscles or a u-shaped pillow. I got both of those at Triple A to use when I need them. Do you have a walker? Do you have any other "tools" in case you get worse?

I hope things get better. If not, you know what I would say to do.

Annie