I know, Susan, it's such a crap shoot being a patient. But since so many diseases "look like" other ones, and the treatments are different, it's best to know for sure what you have before you have drugs.

What if Debra - for the sake of an example only - has CMS? The treatment for those syndromes does not include immunosuppression since they are not autoimmune diseases. I wouldn't want a drug that had the potential for pretty bad side effects when I didn't even need it!

A SFEMG is not specific to MG. Neither is a Tensilon test really. That's why a clinical exam, in combination with all other testing like pulmonary function tests, is essential in people who are seronegative.

Doctors are often thinking not of the patient but of a potential lawsuit if they get it wrong. Well, it takes . . . balls . . . to be a doctor and help a patient who doesn't fit neatly into an MG algorithm. While I understand where they are coming from, they should've gotten it "right" from the get go. If they did that, they wouldn't be so open to lawsuits!

And, yeah, in Debra's case, her health and being able to breathe and move is more important right now than a test. Doctors often only see the "goal" and not the patient. The point in diagnosing is not to get there but to get there SAFELY.

With all the conferences they go to, you'd think they'd have a handle on MG by now. The problem is that they have a narrowly defined version of what MG is and so those patients who don't fit neatly into that are often pooh-poohed or mistreated or not "treated" at all. Like I've said before, I think doctors need to stop having "Gold Standards" for diagnosing and start having "Sensible Standards" for it.

And this defining MG as "possible" and "probable" and "definite" is completely silly. If it's only possible or probable, than keep doing testing like a muscle biopsy until it becomes definite!!!

It stinks that not every patients gets what they need. And we're often so worn out that we can't be our best advocates.