You made my day, Debra, which I know wasn't your goal. So, "a la me," I'm going to scold you about not dialing 911!!!

It's summer. That's when all MGers have to be extra careful. I can't believe how many of you are tanking! I'm sorry you had a bad one yet again.

Don't they get it about the oxygen? It can make an abnormal carbon dioxide level look normal. I honestly think the majority of med students completely flunked fluid/electrolyte status in school (it's all about respiration/metabolism). And I'll bet they too did a bedside spirometry instead of wheeling you over to pulmonology for full PFT's.

Are you on Pred daily? If you are on that for any extended period of time, your adrenal glands basically stop working. Then, if you have too sudden of a drop or too much of one, you can have an adrenal crisis. That can definitely make you weak. You might feel really out of it, sweat profusely or a number of other symptoms. You might want to consult an endocrinologist about it.

Were you out in the heat at all? It could be a combo of that and the Pred up and down.

Why they do that take away the Mestinon BS in the hospital is that they are always thinking MG patients are having a cholinergic crisis instead of a myasthenic crisis. It's like we're guinea pigs. Let's withhold drugs and see if the patient gets better or worse. Not exactly a smart thing to do if you aren't in an ICU. And MG patients usually know if it's the disease or the drug making them worse. If you get worse in between doses, it's probably the disease. Duh.

Again, you guys have the absolute right to have your own meds that have been prescribed for you - by a doctor who knows you better than a resident - while in a hospital or ER. Changing meds on someone who is in a crisis is so dangerous. Especially when they try to change from a brand name to a generic or a brand to brand. Drugs are not all created equally.

Doctors do not take Pred seriously enough. You cannot reduce a dose in someone who is sensitive to drugs like you are so suddenly or too much at a time. I've known others who don't have MG (who are on Pred due to lupus) who got weak like that as well.

I'm babbling . . . I'm so worn out. It's been like Florida here in MN and it takes like a minute to get worse.

Debra, I hope you will continue to get better. I'm glad you are being assertive during your Club Med vacations. Like we have the energy during a crisis, MG or adrenal, to tell doctors how to care for us. I'm glad you have a good relationship going on with your neuro.

Hang in there!

Annie