They might want to consider a BiPap while there and/or at home. That's the next step up from oxygen before intubating.

Doctors tend to discharge MG patients too soon, and don't do an "exit evaluation." You can't tell by looking if MG is better. And steroids can temporarily make a patient worse before they get better.

Try to stay away from salt while on steroids so that you don't retain too much fluid. Of course, while on IVIG, you need to stay hydrated! Also, I hope they are doing the routine premed of Benadryl and tylenol before IVIG treatments AND not running the infusion too quickly.

Make sure you take calcium and vitamin D while on the steroids. Plus try to have good prostaglandins (steroids are anti-prostaglandins) such as eating fish or walnuts or having some sort of omega 3s, etc. The reason some people have stomach issues while on Pred is that it reduces the gel coating of the stomach, so having those extra omegas will counteract that.

I'm sure they told you to watch out for a severe headache or meningitis while on IVIG, right?

You might want to invest in an oximeter. I like the Nonin brand but there are many different ones out there. You'll start to see patterns over time and know when you're getting worse (other than checking your strength and ability to breathe!).

I forgot to say that you were REALLY smart to stop driving. When MG gets worse, it's like driving drunk. Response time is slower.

When a person can't breathe well, they have the choice of breathing or eating. Really, it's that simple.

I am the slowest eater in my family because of MG, but that's a good thing. I take my time eating, making sure that I don't choke. Taking sips of water between bites helps, too.

Try to have some protein shakes or something to get more nutrients right now. They can advise you on that.

If you need help with a social worker, by all means, ask them for that help!

Naps are key for you right now. The drugs will help, but you have to slow down. And socializing is one of the hardest activities because it uses more muscle groups at one time.

Well, let us know how you're doing and what else we can do to help you out, okay?

Annie

I think you're exaggerating a tad, Mike, but it's sweet all the same.