← Return to Double Vision and Autoimmune Diseases like MG: Can anyone relate?

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@ess77

@agirlthing1977 and all...I had a couple of plasma infusions when I was in the hospital for MG symptoms. Even though I didn't have MG, the infusions helped me feel better, have more energy, have easier movement, and have less pain. I had a nerve conduction test at Mayo that showed I didn't have MG and the Mayo ophthalmologists say the same thing, although I do occasionally have some Sarcoid eye problems. But, as the double vision increases, if it does and it appears it is, I'm heading toward a prism lens in my glasses. @patmet, how are you doing with the prism glasses? Are they heavy? Do they just look thicker than normal? I'm getting close to needing them most of the time. My eyesight is worsening, too.

Another thing I've found, my eyelids are quite droopy. This happens with age normally, but mine got so droopy I was seeing through little slits at times. I had eye surgery at Mayo to take out some of the lid tissue...guess you might call it like an eye job in plastic surgery, as it did a great job opening up the eyes and reducing the wrinkles. But, I don't have many wrinkles since using some magic creams/lotions. My lids are drooping again, so I'm close to needing the surgery again. There are specific parameters for surgery, which I meet easily.

I saw advertised on tv a new eyedrop that opens the eyelids and makes you look younger. I asked my surgeon if this drop would help me see better. Yes. She tested it and prescribed it for me. No insurance coverage, but I only use it when I need to see for driving or a day at the docs or out. I love the drops. They may one day be available to help some of us see better and paid for by insurance. They do help some with double vision for me. Doesn't resolve it, but can help.

Hope you get the medical help you need and find peace and comfort. Elizabeth

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@ess77
I’m so sorry for all the problems you have had to deal with! Maybe it would be worth getting a second opinion? Have they done all the blood tests for MG? Some people are negative for AChR, but positive for MuSK or LRP4; some like me are negative on all of the blood tests (seronegative). I was diagnosed with MG based on a Tensilon test and a repetitive nerve stimulation (RNS) test. My neurologist also gave me a trial of Mestinon to see if that would help—it helped with feeling like my legs were heavy and did help with my hip pain, but it only helped a bit with my double vision and eyelid droop. I did go to Stanford for a consultation, but they dismissed many of my symptoms since I am seronegative. I did not feel that they listened to me. Getting prism in my glasses also helped my vision issues and is what has enabled me to continue computer work. As I understand it, they put prism in one lens but not the other to help my eyes align. My lenses are not glass (polycarbonate?) which helps with the weight. I also choose relatively lightweight frames, so I don’t feel like my glasses are heavy. My prescription otherwise mainly corrects for presbyopia so the lenses aren’t too this, although one is thicker than the other. I would encourage you to get a second opinion and maybe get retested for MG before undergoing eyelid surgery again.

@ess77
Hi, thanks for your post. Can I ask what the new eyedrop is you are taking that opens the eyelids and helps you see better?

Thanks!