Originally Posted by AnnieB3

WG, It depends upon what the neuro meant by "abusing" Mestinon. Do they take too much without speaking to their neuro? Take it too soon? None of us can "abuse" it without a prescription and that is the responsibility of a neuro. Sounds like a lot of passing the buck to me.

I have absolutely no side effects of Mestinon and am on 90 mg. every three hours. For me, it is a great drug. Others have bad GI side effects. When used appropriately, it is a good drug.

Have you tried writing down your symptoms and when you have them? You may begin to notice a pattern. Have you taken photos of your face, like in the morning and then after activity or towards the end of the day? Have you seen a neuro-ophthalmologist to assess your eyelids, vision, etc? Do you have any breathing issues? If so, have you been to a pulmonologist to assess that?

It helps to start with symptoms, classify and clarify them and then go to a doctor with it all delineated and written down. Sometimes it takes going to more than one doctor to get answers. Do you have a primary doctor who can talk to you about possibilities?

I hope you can find answers to what is going on.