Abby, All I have to compare this to is my experience with an MG expert. Nope, this is not sounding good.

First, write out a request for your medical records, including the labs, doctor notes, etc. That will be revealing.

Second, and this is just my opinion, don't say anything to them directly. Not even if you decide to see another expert. Why? Because you don't want them to even think for one second you could sue them. I'm sorry but that is how many doctors think these days. One of the many situations in which they think you may is when they diagnose a patient and the patient stops seeing the doctor. It's just how they think.

I suppose the secretaries (do they still use that word these days?) could simply be uneducated.

No doctor has the right to "insist" on anything. That's tantamount to abuse/doing something against your will. There are exceptions to this in medicine but it usually involves you being a threat to yourself or others. You have the right to say no to any test or any treatment. And not only do MG experts know this about iodine, some of my other doctors do too.

Maybe this guy knows something we don't . . . MG attacking the thymus. That's actually an interesting thought. Not commonly thought to happen, mind you, but interesting.

Would you be willing to travel to a state close by for a diagnosis? Does anyone here know of good neurologists in RI or nearby?

Believe me, I know how frustrating it can be to not only not trust your doctor but to be faced with this kind of uncertainty. The best thing you can do for yourself is to obtain a second opinion. It might even be worth starting the process all over again, by not saying you saw this guy. I don't advocate lying to any doctor but sometimes it seems you may need to omit the truth for awhile. Long story but it involves being "red-flagged" and "blacklisted" by doctors in my state. Pretty awful experience which involved the first neuro dismissing my concerns and then the rest of them covering his "you know what" after I got diagnosed with MG so he wouldn't get sued.

And yes, Lizzie, I know . . . there are really good doctors out there! But it's not the good ones we need to protect ourselves from.

Abby, I just hope you can figure out for yourself what you want to do and how to do it. A fresh set of eyes always helps anyway, especially when you are facing having an autoimmune disease the rest of your life. And a good neuro does indeed say things like "Mestinon can make you worse if you have too much." Even one who isn't an MG expert.

Good luck!

Annie