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Ocular myasthenia gravis can be isolating: does this sound like you?
Ocular myasthenia gravis may “only” affect the eyes, but the reality is that it affects many facets of life. Double vision, droopy eyelids, and unpredictable flares can make simple things, such as reading, work, driving, or eye contact, feel impossible.
And because it’s often invisible, it can be an especially lonely experience.
If ocular myasthenia gravis is what you’re currently dealing with, or the MG phase where you started, what’s helped you cope?
What do you wish more people understood about ocular MG?
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1 Reply
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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 . . .
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