Join Date: Feb 2011
well-technically I do not have mg. blood test and emg were negative, I was told by the doc doing the emg at the end of the test. my own actual neurologist has not said a word to me yet, and I had the emg three weeks ago, and the blood test two weeks before that. around here, if it ain't on paper, you don't have it. period. nor do they show any interest in figuring out what you do have, symptoms don't count for squat, only lab reports.
so, sarcastic rant expressed.....I have had multiple eye problems for a number of years. Almost 7 years ago, at the age of 42, my eye doctor detected signs of glaucoma, not the too-high eye pressure, physical signs. so off to the ophthalmologist, who confirmed "normal pressure glaucoma", which is the abnormal type where your pressure is technically okay, but glaucoma damage is happening anyway. Took trials of 11 different glaucoma meds before finding one I could both tolerate and that had an effect. (I am a zebra. A multi-colored, not only striped but checkered as well, half albino zebra. If there is any way to have a weird version of something, a weird reaction to something, a weird problem or intolerance to something, it will be me. oh, lucky me.)
then, about a year and a half into the glaucoma saga, I start feeling like one eye stops seeing intermittently, but when I check, it is still seeing. Off to another ophthalmologist (they each specialize in one tiny aspect of the eye, yet work together in a practice. Is why they are the only decent doctors in this area.) who diagnoses "thyroid associated eye disease", which used to be called Graves disease of the eye. You can have this before, during, or after a thyroid problem, or, even without one (guess where I fall!). Autoimmune attack on your own eye muscles, so they weaken, stiffen, stop working right so that one or both eyes can end up out of alignment, most often swung out at an angle. takes up to a few years to settle down, then you can have corrective procedure or surgery to realign them.
When your eyes don't point in the exact same direction, you get double vision. If they don't move together, one sticks out of whack, or lags behind because it moves slower, you get moments or episodes of double vision until they get back together. Or, your brain can suppress the image from one eye to prevent the double vision, which was what was happening when I'd get that 'one eye is not seeing' feeling; which would happen when I was looking at a distance, like driving the car.
Most of the answers here, saying they get double vision when tired or at the end of the day, are because their eyes are not coordinating at that time, not pointing exactly in the same direction. Probably just because muscles are just tired out and just can't do it anymore at that point. Close one eye, now you are working with just one image from the open eye, so double vision stops.
One way to deal with the double vision, which is something we tried while waiting for the TAED to settle down so you can do a real fix, is to simply put a patch on one eye, covering it up, so that you only work with one eye. So we tried patching the bad eye, the one with the most muscle disfunction and the slowly growing glaucoma blind spot. Yet I still had double vision, which should not be possible with only one eye. so much for the eye patch solution, with the problems you get from going one-eyed, this was not workable for me (had previously developed a bit of permanent vertigo, in my brain, not my ears, testing says. use my eyes to counteract it ("no, I am not spinning/leaning/falling, the doorway up ahead is straight!" going one-eyed made this worse than having doubling/suppression problems). Eventually, they tested for and found the keratoconus, which explained why I could have double vision when using only one eye.
So, after waiting about 3 years for the TAED to settle, and then trying the non-surgical ways to fix damaged eye muscles (which involve about a 4 inch needle and being fully awake while it goes behind your eye into the muscle! several times), I had the eye muscle surgery to realign the right eye. Takes 6-8 weeks for things to settle down after surgery and you find out how well/close to normal you get. Only 8 weeks pretty much to the day later, we got whacked in a massive car accident. Lots of injuries, and guess what, something like that sets your eye-surgery recovery back to day zero, so I have to wait several more months for things to settle down and start having decent vision again.
So, for a few months after that things seem okay. Then signs of vascular thoracic outlet syndrome show up. Scarring under surgically-repaired collarbone is wreaking havoc (I keloid like crazy, it turns out). Then eyes start that funny not-seeing but are feeling. Ophthalmologist first says it looks like a rare (less than 1%) reoccurence of the TAED. so back to waiting for it to settle (which can take up to a few years) before can do much of anything other than patch one eye or add corrective prisms to my glasses.
Only it gets worse. As does the Thoracic outlet problems. Last fall, ophthalmologist asks about everything going on, diagnoses it as vertebrobasilar insufficiency, not enough blood flow at times to the back of my brain, which messes with lots of things, including your eyes (and I have every, every single one, symptom of the VBI problem, except for having my legs buckle under me. but due to other injuries, I don't walk much or far.) Including double vision of all kinds because oxygen-deficient muscles dont' work well. Only, testing doesn't verify the VBI, and best way MRI/MRA isn't possible because the metal plate in my shoulder interferes. Therefore, other docs
don't believe it. I believe it, symptoms are not just sort of, they are EXACT, and complete. And ophthalmologist is about the smartest guy on the planet. So I am in limbo on that, like everrything else.
Then, two months ago, realize right eyelid keeps trying to fall closed all on its own. Ophthalmologist has me do the ice test. helps. sends me to neurologist for testing. but testing says no. Nobody talking to me, nobody talking to each other. So limbo it is again. Have had fibromyalgia for years (or is it really something else?), have so many limitations and unexplained problems since the accident, hard to say what's really coming from what.
So I might have mg, might have had it for years, might be new, might not be at all. Not really going to make a difference to my life at this point, have read enough to know if breathing gets bad, worse than usual unexplained problems since accident, I call for an ambulance. But double vision and other vision problems I know ALL about. Way more than anyone should.