Mestinon as a test? And a few questions.
 

I had my single fibre emg yesterday after it had to be rebooked because of the doctor. After the test she said she noticed some eye drooping. My Acetylcholine Receptor Antibody came back negative so she is filling paperwork for other antibody testing which needs approval from my province (Ontario) because it needs to be shipped out of province to be tested. I'm guessing this may be musk antibody? Would the doctor have an idea of results as she is doing the sfemg? She gave me a prescription for mestinon to take every 4 hours ( I haven't started yet) I am just going to do some shopping and pick it up. How bad should I expect the side effects to be? I already have stomach issues and am pancreatic insufficient.

Everybody is different. If you already have stomach problems, then be prepared for them to get worse.

However I have had no stomach problems at all. As I say everyone is different.

If the symptoms improve on Mestinon, it is a good indication that it is MG. Though it is not accepted as conclusive, as it could be a placebo effect.

I am very susceptible to thinking something works because of the placebo effect; however, that effect always wears off in a few days.

It is hard for placebo to make your eyelids open up, especially if you get somebody else to look at them when you are not looking in the mirror.

Thank you both for the reply, I'm not even sure how quickly I am expected to see a response. The ptosis and weakness comes and goes but the double vision to the extreme right and left is pretty much constant these days. I have been started on 1/2 a 60mg tab every 4 hrs for 3 days then to go up to a full 60mg tab every 4 hrs until I go back in about 2 weeks. The doc said by then I will have an idea. So far it just feels like someone took a weed wacker to my stomach, but that could be just a worsening of other issues.

My husband also takes half a 60 mg Mestinon AFTER meals. I guess he was told to take it after eating to avoid any potential stomach problems. He is still taking just half a pill three times per day, after meals even though his doctor told him a little over a year ago when he was first diagnosed with MG that he could increase to a whole pill three times per day. So far it hasn't been necessary.

Monocular double vision is often the symptom least improved by Mestinon. See if the other symptoms improve... ptosis and weakness.

With what it has been doing to my stomach and yesterday being scheduled to go to the full 60 mg dose I didn't take it until I got back from doing errands after lunch. By which time my sister and I both noticed a droop to my left eyelid. About 35 minutes after taking it the droop was gone. Does it work that quickly? No other differences as of yet.

Yes it works that quickly.

For me I take 135mg every 4 hours and it takes about 45 minutes to 1 hour to kick in.

So far all I have noticed it helping is the droop in my eyelid. The double vision is still there as is the weakness sometimes. I know my brain Mri came back fine and should find out the results of the sfemg late next week. Also hoping to find out if the government approved musk antibody testing. I am finding the mestinon very hard on my stomach. Thanks for all the replies.