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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Member
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How do you deal with your double vision. I've spent a small fortune on prisms (in fact have a new pair to pick up this week), but the best solution I've found is covering one lens completely with scotch tape (I can't tolerate a patch).
Unfortunately my parent think this looks too unprofessional for work and people at work feel it necessary to point out there's tape on my eyeglasses (yeah, I don't think I noticed the three perfectly measured pieces of tape.) I was just wondering if it really looks that bad or should I just be using the tape? |
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#2 | ||
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Well, it does look kind of strange, and could be distracting in a professional situation. In a perfect world, we wouldn't have to worry about stuff like that, but that's not the world we live in, so here are some suggestions:
1. Continue using the tape and just explain every time. 2. Purchase something more occlusive that would perhaps clip onto your glasses lens. I found some when doing a search on "eyeglass lens occluders." 3. Purchase some glasses with tinting and occlude one lens with tape or other material. The tinting would theoretically disguise the tape better. 4. Buy an occlusive contact lens to wear in one eye. I was personally a fan of the Post-It. I'd stick one on my glasses and then if I needed to get up or talk to someone, it was easy to just take it off first. I agree that a patch is uncomfortable, and I just couldn't get past it emotionally as well. Good luck and sorry you're having DV. ![]() |
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#3 | |||
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My double vision happens in both eyes and happens mostly when I read too long. I just rest my eyes. It's best if I read in ten minute spurts, but I always forget to look away to rest my eyes.
Is the tape used because you only have double vision in one eye? |
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#4 | ||
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Quandry,
DV caused by MG can be "corrected" by covering one eye, since the DV is caused by imbalance of strength between the two eyes. Many will switch the side of the covered eye, to prevent undo strain on the "seeing" eye. However, that never worked for me, as my right eye was so very weak, it wasn't able to track well enough when the left was covered for me to be functional. I always covered the right eye. Hope this helps. |
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"Thanks for this!" says: | Quandry (02-24-2013) |
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#5 | ||
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Member
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Quote:
The lenses my doctor just made and I haven't picked up yet have a special prism that lifts everything higher, he said he rarely uses it, but noticed I converge better when I don't look down. I'm afraid its going to cause more ptosis, though. I'll try it, but in the end, I think I'm going to end up either a darkened lens or a frosted lens. Post it note may be worth trying though. Thanks. |
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"Thanks for this!" says: | Quandry (02-24-2013) |
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#6 | ||
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I too have experienced double vision which happened right after my diagnosis in 2009. My eyes would lock and I couldn't look side to side. I tried to use an eye patch (moving it from eye to eye) and my neoro prescribed two rounds of IVIG to no avail. I was so sick at my stomach that I couldn't eat.
I eventually ended up in the hospital where I was given prednisone and in a matter of three or four days my eyes were acting properly. Well after four years of taking prednisone (and the dosage being reduced slowly) I now have osteoporosis and a fractured spine. Good luck finding a solution that does not have the horrible side effects that I have experienced. Southern Bell ![]() |
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#7 | ||
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Southern Bell, that is why I am on IVIG and not Prednisone nor immunosuppressants, though I know they are a lifesaver for many. I often wonder if I'd have better quality of life being on both, but I am so afraid of the side effects I just live the way I am (unless it gets to a point where I have no choice due to breathing issues or something really bad.) IVIG keeps me going and though it is a pain and there are some side effects, I can handle them. I also have the Chronic Lyme and coinfections so any immunosuppressant could be pretty deadly for me as my immune system then could no longer keep the infections in check.
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#8 | ||
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Junior Member
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I've been dealing with double vision for 10 years. I too have invested a small fortune in prism glasses, ranging from about 5 diopters of prism to 12 prism diopters. Wearing a patch didn't work out and I tried taping my one lens but wasn't able to adjust. I've managed with the prism glasses, but the double vision was often the worst symptom to deal with when I was working. I certainly understand what you're going through. I hope you find a solution that works for you.
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#9 | ||
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Member
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Tracy I also have another rare autoimmune illness and have tried 5 or 6 rounds of IVIG (at this point I can't remember) and one round (12 sections) of plasmapharisis and neither did any benefit to correct any of my symptoms. I truly wish I didn't have to go the prednisone route because of the side effects but I had to do something to correct the double vision.
I have to take so many different drugs to help me function and I know all of them have side effects, but I don't know any other way. I know my immune system is very comprimised but I have learned that one thing that helps has severe effects on my body. It's a no win situation. I'm glad you have found a good solution to help you. I also hope backwardpawn can do the same. Southern Bell ![]() |
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"Thanks for this!" says: | pingpongman (02-25-2013) |
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#10 | |||
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Junior Member
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Quote:
Gotta love the captain obviouses, right? lol. I did try the scotch tape thing and it helped me out a bit. I don't like eye patches because my eye lashes will touch the patch and that bugs me haha. The tape was the best, so I have an old pair of glasses (same prescription), that I use on my double vision days. For work though, I get it really bad so I have to stay home from work, usually for 2 weeks, until it goes back. Unfortunately, unless these people in the world have issues like us, they will never really understand that there are days you need to walk around with tape on your glasses ![]() ![]() |
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