Hi ladyredbird, I wanted you to know you are not alone. I have ocular MG (eyes) shaking, a wondering right eye and droopy eyelids. I get headaches, I suppose from eye strain. You may also be experiencing side effects from the Mestinon. I have been on Mestinon since Sept 2016.(newly dx). I have been experiencing excess saliva, a persistent dry cough, frequent urination and excessive sweating. Even taking the Mestinon I would experience symptoms after it would wear off. I also have general MG that effects me from my face to my toes. I have some days when I walk normal in the morning then by noon I would drag my right leg, my right arm becomes heavy, and my neck gets to weak to hold my head up. The Mestinon is working, I take 60 mg 4x's a day. I am currently on steroids 20 mg daily. Just when I think I'm doing better a symptom shows up and lets me know I have MG. The one thing I've found with this disease is that even on good day, I still don't feel like myself. We MG'ers will have to find what works for us with medication to get us back to a good quality of daily living.


I hope my post gives you some insight. God luck !!!!

Thanks for your reply. It does help hearing others are experiencing some of the same things. I certainly wish none of us to go through this but stronger together maybe.

Our symptoms sound very similar and treatment is the same. I will keep you in my thoughts. Thanks again

Based on my current situation, any and all medications, tests or surgery have had no affect on my MG. I go to the VA for my procedures and seems nothing has helped. Only thing I can suggest is to take it easy and wait for things to possibly get better (remission); remove any and all stress.

I have no issues with eyes shaking, headaches, or cranial pressure. However after 2 years of MG I've adjusted to a new normal - about 80% of previous health. Also, I tire quickly but also recover quickly. Two years for me on Mestinon, prednisone, and an IVIG every four weeks.

Please keep posted on how you are progressing with treatment. Keeping you in my prayers.

Sorry, if my writing is not clear my Mestinon was wearing off. Please keep me posted on how you are progressing with treatment.

Thanks Quen1966 - I certainly will and I appreciate the prayers. This afternoon is my single-fiber emg. I am not looking forward to that. I haven't been able to take my mestinon since Sunday night so I am ready to fall over, literally.

The first year with MG is usually the hardest for most folks. It takes a while to get a treatment figured out to first get things under control, and then figure out the long term strategy. Most folks do OK and get a decent life back and although the disease is still ther, it is under control.
My neurologist always thinks we are over reacting as we are treatable and likely to do well, whereas many of her patients have a very dismal future in comparison. We just have to be patient. I think a year was my time of being patient!
Good luck

Hi ladyredbird, hope you had a good Thanksgiving? Hope you made it through the single fiber EMG. I had my first one in May 2016. I found it to be very painful as I literally felt high levels of shock run through my body. I actually had two EMGs my first neuro somehow got it wrong and the test results was a false positive, which lead to my prolonged dx and worsening of symptoms, and becoming hospitalized for 4 days and was still not dx. I finally received a dx in Sept 2016 10 min. into my 2nd EMG which was so painful. In spite of the pain, I was finally relieved to have a dx. I hope your EMG test helped to answer any questions you may have. Good Luck !!!

Hi everyone - I did the single-fiber EMG (not comfortable at all), left with a black eye. LOL Not often you leave the doctor's office looking beat up. My husband was horrified. Anyway, it was almost neutral but swayed enough to the positive side that along with my other symptoms and knowing the Mestinon is helping so much they gave me a diagnosis of MG. I went in over this past weekend for my first IVIG treatment. That has really knocked me on my butt. Starting to feel better today. Hope everyone else is doing well.

Hi! Have you had any scans done to look at your thymus? My MG came on in Feb this year, although looking back I had symptoms last Dec. The doctors found a thymoma, which we found out after surgery was cancerous. I have been on 50 MG of prednisone and 180 of mestinon daily since May (after my surgery). Any way, long story short, I just started to notice an increase in my energy level and a reduction in my symptoms. So, you never know when you'll see an improvement. We are starting to reduce the sterioids but it will take a year to get to a maintenance dose. Long story short, if you haven't had them look at your thymus for irregularities, I would definitely recommend it! Good luck to you.