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Originally Posted by strizzlow20
I had three eye exams. I saw an optician who said the eye was healthy. I saw a neuro-opthamologist who did a field vision test, dialation with exam, and an OCT scan of the eye. I told him that some of the lines appear to bow in and out when I look at the grid and he said it cannot be from the eyes. It's subtle bowing, but still "wavy." He only observed eyelid weakness and said I was lucky I didn't have constant blurred vision. He referred me to a retinal Specialist because the foveal (responsible for center field of vision) was pretty thick at around 300 when it's typically below that. The retina Specialist did a dye test and checked everything and said it was healthy. They both did agree my symptoms were odd so they weren't sure. My neuro doesn't think these symptoms are too unusual for MG but still did a thorough workup. I am having the MRIS redone on a GE 3T Excite HDXT because the first MRI machine was only a .3 Open Air MRI which isn't every good at detecting lesions. They were ok with me doing this , but the doctor is confident this is not MS. They see nothing wrong with the "better be safe than sorry" attitude and my insurance will cover the testing, so I am appreciative I have their support. I will continue with the steroids and Mestinon to see if anything changes.
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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.