Thanks, Mike.

Jane, The problem with "more infusions" is that Solu-Medrol isn't that kind of drug. More steroids isn't necessarily better. The drug can make MG patients worse before they are better. They should be trying IVIG or plasmapheresis next, which is why you need an expert (no offense meant to your PCP).

You don't have to see Dr. Rivner in order for the LRP4 to be ordered. Stick with the original plan. Seeing who is available first is a good plan.

EMGs are often negative, especially after having steroids. Duh, doctors. You are in bad enough shape now that going off of all meds just to prove MG is dangerous. Sure, there are the very few patients who test positive on a SFEMG even when on immunosuppressants, but that's like finding a needle in a haystack.

Do you meditate? I don't mean breathing deeply while sitting! There are many guided meditations that can help give you an escape from the stress of MG or doctoring MG. I meditate daily. It's important to either be in a recliner or in bed when a meditating, due to MG. The muscles will be more relaxed/weak.

One of the best meditations is pretending that you're a leaf on top of a tree, in a beautiful and peaceful garden (or a beach or forest or whatever you prefer!). As you float slowly down from the tree, count slowly backward from twenty in your mind. Once you reach the soft ground, you should feel calm and the body light. Meditation may take some practice!

Stress is not good at all for MG.

The other issue that people don't think about with MG is how rough hypoxemia is on the heart and brain. That's another reason why getting help as soon as possible is best. During my crisis, my ECG was showing ischemia. Not good.

And only you can tell if you are truly up to traveling. You may need to check your O2, strength, and blood pressure/pulse before leaving. Make sure you have enough time to rest after the appt./tests.

Have you ever been to Schooner's (Panama City)? It's one of my favorite webcams. Very peaceful. And they do a shotgun (harmless) at sunset.

Schooners Sunset Live Web Cam

Don't worry about what doctor you see. Fate has a way of working things out the way they should.


Annie