Whoa!! That's the guy I emailed on the east coast. I was so grateful that he wrote me back right away. I considered going out to see him, but I'm so gun shy at this point. That you say that he's a good listener and good doc though means a lot to me. I think I'll call tomorrow and see if I can get an appointment.



Maybe you can ask this WA guy you'll see in two weeks to redo the AChR antibody test. Problem is that Mestinon has actually been shown to have an effect on the humoral immune system where antibodies are produced. Can you even go off of Mestinon? Caffeine does what Mestinon does (read my earlier post), so you have to be cautious about having that before tests too.


I read your post about the caffeine. Very interesting. I was thinking today about going off the mestinon and only keeping it for when I really can't stand the suffocating. Or maybe that's when I should go into an ER and try to get pulmonary testing. I don't know. Anyway, you're right, I'm going to go off it in the hopes of looking my worst when I see the next doc.




The doctor at the Mayo was Dr. *******. It says very clearly in my medical records that he didn't think I had mg because of the low titers so I think I'm okay with saying his name. He was very kind and did listen, it just seemed that he wasn't completely familiar with mg.

About the blacklisting, I hear you, I really do.