Kathie, It's reasonable to do the basic differential testing, but doing too much testing is, well, stupid. MG is a clinical diagnosis, backed up with tests. I can understand the doctors doing more testing if you're having multiple symptoms, but have they done the thinking first, before plunging into haphazard testing?

The differential for MG is a small list. A brain MRI, some blood tests, a good clinical exam, etc., is usually enough. Do they think you might have an additional disease or that you might not have MG?

I had a regular muscle biopsy. They can only numb the skin, not the muscle (which they cut into), so it was quite painful. And before they get to the muscle, they need to carve through any fat above it. They look for muscle fiber size, inflammation, NMJ, etc. If they want to look at the mitochondria, there is more specialized staining done.

There's a more specialized biopsy that's done for CMS, but it's done on, for example, the intercostal muscles and it comes with far greater risks. Most doctors won't do it.

You can have MG and another disease, as you know. I hope they won't pull the MG diagnosis while they run you through the diagnostic mill, making you doubt your sanity, while losing more energy and money!

What are your thoughts on all of this?

Annie