Thanks, Alice, that explanation is exactly the one a neuro gave me once. He's the kind of neurologist who wouldn't dare go against the "status quo" openly but would talk straight to a patient.

I imagine that when someone says "I'm right" for decades, it might make that person - and their colleagues - look unprofessional or unethical if they said now that they were "wrong." And it might make others not trust them again. Which, in my opinion, is super silly. None of us are perfect. And science and the human body is never easy.

One problem I have with this is that these "professionals" aren't thinking. Or learning. Or they know all this and are hiding it. Like you said before, Alice, "hoarding" the information until they can make the next "great discovery" or drug.

What makes me literally crazy about all this is that so many patients are suffering. Patients who so obviously have fatigable muscle weakness.

Hi, Sonja. Welcome. I hope you will start a post and tell us about yourself! Sonja, I would add to that . . . get the copies of ALL your tests. I had a positive antibody back in 2002 and my doctor didn't tell me about it nor did he give me a copy. It wasn't in my records either! I had to go to the clinic who ran the test to run it down - seven years later.

And, yes, Jana, it was indeed you who stirred all this up (via Sonja). So thank you both.

Annie