Hi, Lbee. Sorry I'm late in responding, but I'm doing a lot of patient advocacy for my mom lately. I'm sorry you are doing so poorly and don't have answers yet. Frankly, I'm quite concerned by the symptoms you are describing. Your symptoms seem to be fatigable, and that is the hallmark of MG.

Steroids can make a MG patient worse before they're better. Your response is very typical.

Now that you are on a steroid, a SFEMG may look normal. Silly doctors. I know you needed to have some help, but they do this to patients and then there isn't enough evidence to diagnose them! And steroids are nothing to mess with. The MG experts are trying to stay away from steroids except in a hospital setting when a patient needs to be pulled out of an exacerbation or crisis. But if someone is in a crisis, IVIG or plasmapheresis is more effective. Steroids have a LOT of side effects and are hard to withdraw from.

If you can't walk, breathe, or move well, that is the time to go to the ER or dial 911. Experts recommend 911. Why? Because MG patients can go downhill very quickly. And most patients in your condition have some kind of hypoxemia, an O2 that is below normal. Hypoxemia is very hard on the brain and heart. That can cause ischemia of the heart. O2 and the heart are usually monitored in an ICU to make sure that a patient isn't rapidly becoming worse.

PLEASE don't hesitate to go in, even without a diagnosis. You have a preliminary one. You sound as though you are in an exacerbation right now. And, if you have MG, 82% O2 is a sign of a crisis. I don't mean to scare you, but the best place for you is in a hospital!

Being short of breath while talking is not odd; that's yet another sign of a crisis. You may be so weak that you don't know you are short of breath. Someone needs to do an arterial blood gas on you! And full PFTs (breathing tests), including MIP and MEP. A neuro is not a pulmonologist! MG patients need pulmonologists as well as neuros. They work together in a hospital setting.

Whatever is going on is serious. Don't doctor yourself and think, "Oh, I'll just rest and be better." That is very dangerous. You are not appreciably better. You need help. Please let us know how you're doing, ok? I hope they'll know the results soon. If not, they should redraw blood and send it down to Mayo!


Annie