Mayo Clinic neuroopthalmologists and the MG specialist said no way. 2 other eye doctors and 3 neuros total said no. It's present when one eye is closed too which wouldn't be the case with Myasthenia Gravis according to them. Whatever is happening is bilateral though. I am now having weakness in my feet to my shins, elbows to hands, and my face and jaw muscles at times. Me feet feel like lead and so do my hands at time. I'm getting twitching as well, especially at the bottom of both eyes and not the eyelids. Some other members agree with you on here, but sensory issues, balance, and the vision issues according to the physicians point away from MG. They tested all of the different antibody tests at Mayo. Their range for the binding antibody is 0-.02. I tested at a .14, 7 times over the high end of the normal range. We're looking at different possibilities such as MS, although all imaging has been clean, including an EMG and single fiber EMG. One neuro said I don't have MG because the single fiber EMG was negative. She said gluten was my problem lol. I tried it, and same weakness. Mestinon hasn't been very effective and I do not feel a ton better when I first wake up. My legs will be fine, but within 45 seconds of standing they have an internal tremble and weakness that is hard to describe. Thanks for the reply!

The eye symptoms are par for the course with MG. They're annoying, and we can take meds and vitimins to help, but we need to learn to adapt. My eyes change every day, sometimes multiple times a day. The mestinon really helps with the eyelids and the steroids do help with the eyes. That said, see if your doc is willing to try another immunosupressant, such as Cellcept, to get you off of or lower the dose of steroid.

Steroids are a miracle cure until you get the steroid side effects. I'm down to 20mg Prednisone from 60mg. My eyes are a little worse than on the high dose of steroid, but I think the Cellcept and the thymectomy are really helping since 20mg Prednisone wouldn't have cut it before. My A1C is also down to 5.4 so cutting the steroid is helping the diabetes. I've tried going lower tahn 20mg and think I'm at my limit for now. May even need to go back to 25mg at some point, but I'm hoping to stabilize at 20mg.

Anyway, Cellcept or IVIG have fewer side effects and should help, even if not as much as Prednisone, with much less risk. Also, if you wear glasses, you can try putting frosted scotch tape (sellotape) over your non-dominant lens. This helps a lot of people, including myself.

One last thing, I know this sounds drastic, but consider the thymectomy if you haven't had it done--especially if your MG is generalizing. My surgery was a year ago and I think its really starting to help.

Good luck with everything.

Im pushing for treatment big time now, i don't have the strength to make the bed or just do chores. I take naps to recover and today it took three hours to recovery to the point to function. Im being tested for small fiber neuropathy so my doc wants to do that first. Im nervous for the first time since ive had mg i may have to take a medical leave. I cant see straight even when i close an eye my vision is wobbly and distorted like that. Its not just double. Im having trouble holding on to the steering wheel. Thats dangerous and i dont want to hurt someone else or myself. ive only taken 10 mgs of steroids at a maximum which is too loe. Mestinon varies for energy, but nothing has helped my eyes. Its gotten worse since this started. everything is negative for ms, whixh is good. Im ready to take a bigger or better treatment. I have to try something. even fingers and jaws get weak and tight at times. Thank you. 4 eyes and some others said thus isn't too unusual for mg, but all of the neuro ophthalmologists didnt agree. Noe, because they saw a convergence issue, slight upbeat nystagmus on central gaze, and syne saccadic eye movement in the eyes, one neuro said i may have the ocular form inky because the sfemg was negative. Lol. I always had bulbar symptoms that were mild for years. I have a little wait but i cant stand by and do anything. Mayo was actually pretty baf for me because of the sfemg and to them i.look ok. although im 7 times over the antibody range im probably going to have to have a crisis for them to be sold on mg.