Thanks, Steph. This isn't really an easy topic to talk about. No one wants to think that the medical community has puppet strings attached. I've been noticing so many unpleasant changes lately, like odd forms they want you to fill out that dig way too deep into your personal life, pushing vaccines of all kinds at every single appt., not wanting to do testing that is obviously necessary and so many other things that aren't what you went to the doctor in the first place to discuss!

And every single doctor's office is so busy trying to comply with the national requirement to put all medical records online that they're almost doing double the work.

Mike, I didn't mean to upset you in any way. I'm sorry if I did. However, I was simply telling my truth of what I know to be happening out there - after a lot of research.

Dr. Howard, and some other doctors I know, have a hard time with a "maybe" diangosis. I honestly can't fault someone for having a personality, or a fear of a lawsuit, and, therefore, not being able to deal with "iffy" territory. And since that is the area where doctors are often sued, they don't want to give potentially damaging treatments to a patient if they aren't sure of what they do have. And they don't want to diagnose when they aren't confident in the diagnosis - which is their right and responsibility as a physician to do.

If I contrast the MG expert who diagnosed my MG with Dr. Howard, it's obvious that this isn't about facts. My diagnosing doctor was quite sure right away that I had MG. And he was going to do whatever it took to figure that out. What's sort of funny is that he studied under Dr. Howard. So the validity of my situation, and my MG, had nothing to do with facts but with a big difference in philosophy and approach. And fear.

How sad is that? The facts say that I have MG. In my case, the first neurologist I went to was a "renowned" MG expert, who screwed up and dismissed my concerns. Everything after that was an effort by the other neuros in my state to keep him from being sued. Yeah, I have proof of that. My positive antibody test was kept from me on purpose. So these kind of "games" happen all the time.

If a patient has CMS, immunosuppressants would not help them since it's a genetic disease. If your sister and you have CMS, then you could sue them if they gave you drugs for no reason. Could you have CMS and MG? Yes. I have questioned whether I have both too, since I've had MG since birth.

There is an erroneous perception in the MG community that MG is not genetic. That is not true and has been written up about. I know someone whose sister has MG too. This is the best site for seriously looking at how many possibilities are out there for MG and related syndromes.

http://neuromuscular.wustl.edu/synmg.html

As far as the best doctor for anyone, that's up to everyone to decide for themselves. Doctor shopping - what some doctors call "doctor hopping - isn't a great idea because they can think you're trying to find someone to treat you for a disease that doesn't exist. But sometimes you need to do that to get the care you deserve.

Annie