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I am so frustrated currently with ocular symptoms of MG. I don’t have droopy eyelids, but my double vision has been very bad lately. I re-started IVIG infusions the end of April 2025. They have helped with the swallowing problems I was having, but my eyes haven’t improved.
I already have prisms in my glasses but have to get new ones made with increased prisms. My insurance only covers a new pair of glasses every 24 months. So unfortunately it will be self-pay, which is very expensive.
I am currently driving either with an eye patch on or keeping one eye closed. That helps with the double vision but makes depth perception non-existent. In addition to the IVIG, I’m taking 150mg Imuran and using 90 mg of Mestinon 3 x a day.
I joked with my adult daughter that, since I’m walking around stores with one eye closed, eventually some woman is going to slug me for winking at her husband!! 😆 Might as well find something in the situation to laugh about. . .
In all honesty though, this is hard and I feel sad about it. I’ve already given up wearing contact lenses. I cannot drive at night if it is raining. The spectre of having to give up driving all together looms.
It is not all doom and gloom- I am incredibly fortunate because my husband is happy to drive me around. He’s a gem! Still feels like an impending loss of independence . . .