I want to ask about what is going on, I am 7mos new to MG, and could use your experience. I was diagnosed last Spring with MG and put on Mestinon 3 x a day. 60 mil each pill. I have left up my happy smiles, because I really am. I dont have symptoms ( at least yet) like a lot of you. My worst was chewing, speaking, and droppy eyes. All not too bad.
I started the Mestinon and by the next day all gone, back to normal. About 3 weeks ago my droppy left eye showed again. now some mild chewing problems. I caled the nuro, talked with his nurse, she said I should get a new antibody test. She said to adjust meds they need that. Test should be back next week.
Have you folks experienced this, and if so did increasing Mestinon help, or do you need a new med. Also wondering if this natural fluctuation of the disease, or does it signal a worsing of the disease. will it get less on its own, or what?
I am a 74 year old male. pretty good health and am just wondering about all of this
THANKS FOR ANY COMMENTS
FREDH

No way to tell WHY this has cropped up. It stinks, doesn't it? What I don't understand is the nurse saying you are "needing" a new antibody test. Once you test positive, you're positive. The numbers mean nothing after that as the symptoms don't necessarily correlate with the numbers.

For now, probably it would be good to treat this as conservatively as possible--extra rest, avoid stressful stuff like shoveling snow or heavy work and perhaps adjust the mestinon as instructed by the doctor. Hopefully it will settle down on its own but if it doesn't, there are many options available for you to review and consider.

Good luck!

I wish you well.

I have had to increase my mestinon dosage over the past year. I started on it a year ago at 60 mg 3 times a day. I was actually pretty scared of it at first and didn't always take all three. I am now up to 5 a day. I guess I got worse over the year's time. It is my impression or feeling that I have not continued to get worse over the past month, so that is good.

I would not be surprised if you also have to go up a little on your dosage. I hope you feel better.