Hi whirlwind,
I hope this post isn't going to add to your confusion because I have a difference of opinion on whether you need the EMG now.
I like your neuros approach in your situation as you have stated it so far.
Since your troublesome sx (symptom) is ocular at this point, and he only wants to put you on Mestinon and see how well it handles your sx I don't think you are jepardizing anything by taking the wait and see approach.
As long as you pay attention to the warning he gave about crisis.
Because Mestinon is fast acting and short lived in the system, and has really very few side effects and no real long term bad effects, it is the safest and least invasive of all the treatements. If later you have other bothersome sx's come up, you can pull off the Mestinon for 24 hours, have the EMG, and get right back on it.
I disagree that you need the EMG right away. I have had to have several EMG's. Even though I have the one that I was diagnosed with, and it showed severe decrements, a new neuro always seems to want to do it over. Also, neuros often repeat an EMG to monitor you or your treatment effectiveness. So even if this guy does one now, if down the road you decide to change docs, or have to switch due to insurance (like I had to) or other reasons, there's no guarantee the next one will be comfortable with this guys test.
I know that just after getting a diagnosis on any disease, we tend to worry that there's more to it. But really, if you don't have any other bothersome symptoms I believe in letting it ride like your neuro said. You can truly drive yourself crazy worrying what all this or any disease is doing. The bottom line in my opinion is that an EMG isn't going to change the course of the disease or your treatment at this time. I look at this kind of like any illness. If I have sneezing, cough and watery eyes I assume it's a cold and take the minimum meds I can to help me cope. If it changes and I start having more severe symptoms like fever, chills, sinus pain, chest pain - then I go to the doctor to see if something more needs to be checked. I don't go to the doctor asking for an Xray until it appears to be something more than a cold.
At this time, you have ocular symptoms and some arm pain that may or may not be MG related. If mestinon takes care of it, that will be best for you. If it doesn't take care of the problem and the problems spread or worsen, you can get further testing.
What I think this comes down to is if you trust your neuro. It's hard to figure out at first. It takes time to develop the trust, but part of it is personality types. I am good with a more conservative approach. Some people need the more aggressive approach to feel comfortable.
I wish I had joined a forum like this long ago. 14 years of beating my head against a wall, trying to figure out what was best and having no one with experience with the disease to talk to made it more diffiucult that it had to be. Here, you can get the different opions from real people that have varying degrees of the disease, have dealt with progression or other factors and use that to help guide you. In some ways it may add to the confusion, but I think when you find your "type" you will be able to evaluate all the information to make decisions that are best for you!
That's my hope anyway!
Keep posting, asking questions, whatever!
