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.

Mine's being caused because my two eyes can't converge. Using a patch made my good eye shut for some reason, but tape let light into both eyes and I can keep the good eye open.

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.

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

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.

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.

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

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 Something that I've observed over my few years of having MG

Southern Bell,

How's your SPS doing lately (better, hopefully)? It really is a no win situation, though. I got such a boost from the Prednisone that I though I could cut back the benzos. Even just half a pill and now I can barely walk It has me a little worried that this may be another short term solution. I'll guess I keep everything the same until Mayo now and see what they say and hopefully this lasts that long.

I guess the silver lining is that by just skipping half a pill the doctor at Mayo will be able to see whats going on and, at least for now, I can function.

Tracy 9,

Bless you! I didn't realize you also had Chronic Lymes. As you already know, our son has MG, but our granddaughter has Chronic Lymes with coinfections. One of these problems is enough to knock anyone off their feet. I can't imagine having both Lymes and MG. Praying for your healing and for peace as you deal with these diseases.

Interested

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I was on prednisone since april 12 and by October I had cataracts and had to have them removed Im 29 still trying to get off of the prednisone having horrible side effects way to fast