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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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4 Replies
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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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Thank you for opening up and sharing this. Living with double vision and the adjustments it forces can feel like such a heavy mix of frustration and loss of independence. I’m glad you and your daughter were able to find some humor in the situation, but I also hear the sadness and weight behind it.
You’re not alone in these challenges, and it’s great that your husband is so supportive. Thank you again for being open and adding a bit of humor, it really helps others who might be quietly facing the same struggles -Jodi, Patient Advocate
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I wish I’d been warned about being patient. There are 22 muscles in the eye. It was unrealistic to anticipate that all 22 muscles would suddenly start working together, on the same day, after x number of months, or after taking a new treatment. I, too, was driving with one eye closed. I had given up on reading novels.
One day, I remember waking up and noticing that the ceiling fan had 5 blade instead of 10. Things deteriorated after lunch, but I learned that the time of day could make a difference.
A few weeks later, I noticed that the telephone line across my cul-de-sac was only one line again. However, if I tilted my head to the left or right, two lines reappeared. Still it was an improvement with distance vision.
Somewhere about that time, I discovered that reading or watching TV improved if I wasn’t lying down or in my recliner. Apparently, it required a different set of muscles sitting up.
A few weeks later I noticed that I could look to the right 30 degrees or so, without double vision. A few weeks later I could also look to the left 30 degrees. I could park the car with both eyes open. In another month, the field of view improved to 45 degrees. In two more months, about 80 degrees.
My neurologist encouraged me to take Mestinon as I need it and not on a strict schedule. I didn’t need any in the morning, spread two more pills out until after supper. I took a 4th one only if I’d had an evening event to go to or I had a lot of physical exertion during the day.
After a year and a half, I was reading novels on my Kindle again, enlarging the font as the evening wore on.
After 3 years, I have trouble marking with a tape measure, I’m very careful with stairs, I don’t drive at night in unfamiliar territory, and. thank goodness, my new car has a blind-spot beeper.
I now don’t expect my vision to get perfect, but I think I’ve adapted.
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I’ve had ocular MG since 2016 and had trials of immunosuppressants, Mestinon, and plasmapheresis, with little response at all. After 3 months, Prednisone was tried and proved to be an immediate success after only 10 mg. Since then , I’ve had several relapses but, each time, Prednisone is reimplemented and it has always brought about an abatement of symptoms , usually w/i a month. In the last 3 relapses , I’ve required a starting dose of 25– 40 mg. Once symptoms are controlled, I do a very gradual titration to a zero level and am usually symptom and drug free for usually a year or so.
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