finally referred to a MG specialist
 

In this "journey to a diagnosis", I am excited that my PCP has recently referred me to a neuromuscular specialist who works a lot with MG.

The guy's creds look good, and on another forum I found a post from a MG patient saying he was really good and caring, and especially talented with generalized MG.

The only other neuro I've seen (local U) said that MG was ruled out because my AChR was normal. No talk of seronegative, no talk of MuSK or tensilon.

Even better is when I called the MG specialist's clinic this morning they said "can you see him two days from now?" Yay!

Here is the MG guy's bio: http://www.noranclinic.com/providers/praful_kelkar.html

That is SUPER exciting and he certainly looks like he knows what´s what!

:Good-Luck: in just TWO days :)

Great!!!! Keep us posted.
Mike

My latest nuero has redone all the tests and all are negative yet he is convinced I have MG probably because of my past history with thymoma and that mestinon helps. It's all very confusing and in my mind I sometimes still wonder whether it's MG or not. But life goes on so just smile. Sounds like you have found a good guy and hopefully he can steer you in the right direction. I am sure you can't wait to see what he says.
Al

It kind of makes me rethink how I've approached other 'first visits' with doctors... I have all of my records together in a folder. When the doc walks in and sees that I have everything all organized, I wonder if s/he thinks "oh great, one of these types of people".

Maybe I should just try something different this time and leave all of that in the car. Talk from experience and the heart about what's going on.

I personally do not think it matters. A good physician will want to know the details of your life and illness and wouldn't pay much attention to such ridiculous details.

I think you've hit on something and would leave the medical folder in the car (or with you in a satchel but don't take it out).

I would let him control the conversation for a bit. You can learn a lot about a doc by how he handles the first 'meet and greet', your symptoms, what questions he asks, etc. There will always be time for sharing your previous test results etc. if you like this doc.

Hope it goes well!!