Hi Flutebell,

I am sorry to hear about all that you are going through. I had similar problems in the past. I had negative blood test results for MG, and also my EMG/SFEMG tests were negative. However, I have the symptoms of MG. Like you, I respond to Mestinon. I also had some serious exacerbations which landed me in the emergency room and ICU.

I live in California, and our medical system is different than yours. If you have the option of seeing a neurologist at a teaching university who specializes in MG, that would be a good step to take. Even so, it may be hard to get a diagnosis since you have had negative tests thus far. If you do see another specialist, yes, you should skip the Mestinon that day. Take it right after your appointment. This is especially true if they will be doing nerve testing. They can't get accurate results if you've taken Mestinon.

In my case, I have a brave neurologist who is willing to diagnose me on the basis of my symptoms. She has seen me at my worst several times now in the ICU and ER. She believes I have MG, even if it somehow isn't showing up on the tests. If it is possible for you to get a second or third (or fourth) opinion, I encourage you to do so. Meanwhile, please be careful in the heat! It is best to avoid it if you can.

Take care,
Erin