hey everyone!!! HOpe everyone has been well! It's been a while since I have been on here.. I got a diagnosis of atypical CIDP/inflammatory polyneuropathy, but I don't have the typical symptoms, so I question the diagnosis sometimes.. well a lot of times!! But after 12 + neuros were all stumped.. at least I'm getting treatment and at times seem much better! When I was admitted into the hospital, I could barely move, breath etc!

the 2nd IVIG worked A M A Z I N G!!! I almost felt like the old, and better version, of myself! it was GREAT>.. however I got a cold and fever and things worsened.. then the next IVIG (every 3 weeks) didnt' work at all.. last one worked well again, but not like the 2nd one.. what a roller coaster!!!

Anyhow I had a question.. my vision has been "off" since this whole thing started... I have said it was double vision, but it wastn' exactly double.. just wierd!! Well now it has worsened and is obvious - it is double, or shadowed/ghost image one on top of the other..
My question is, with MG do you have diplopia when you have one eye closed? or is it only with both open? I have double vision mostly in one eye, a little in the other.. the images are one on top of another- is MG diplopia typically vertical or horizontal? I plan on making an appointment with a neuroopthamologist this week. I saw a regular suburban opth months ago and they said everything looked fine..

The scarey thing is I now have muscle atrophy in the hands.. so I fear my original fear- ALS.. though 3 emgs, and 12 neuros say absolutely not.. I hoep they are right! I have ptsd from my first dr appointment! Also my weakness has become more obvious as to where it is - mostly in the hips and facial muscles.. which from what i have read the proximal joints go against ALS, i think!

Any advice is greatly appreciated, yall are just a wonderful support group, and I thank you for all of your support!

I had double vision for about a year. If I covered one eye right or left my vision was normal. Anyway the neuroopthamologist will give you some answers hopefully. He was the one who gave me my first MG dx.
Mike

I've had double vision for 9+ years. It's mostly been vertical, but occasionally changes to vertical + horizontal. The double vision always goes away if I close or cover one eye. Recently I've had some decrease in my double vision with being on prednisone and cyclosporine. In addition, the weakness in my arms and legs have decreased significantly. But the double vision still seems the most difficult to treat. I'm losing hope that I'll ever return to NO double vision.

It sounds like it'd be a good idea for you to be evaluated by a neuroophthalmologist. I hope that you're able to get some answers.
Cate

thank yall both so very much for your time! I am going to see a neuro optho on thursday.. I worry that it is mostly in one eye, and not improved when I close/cover the other eye..not sure what the heck that means to my mystery diagnosis.. I guess could go along with the polyneuropathy affecting cranial nerves column.. we shall see! Maybe I'll get some good news- a treatable/manageable potential diagnosis. thanks again, hope yall are well!

I have double vision when using only one eye, things look just slightly off, like a ghost image on an old tv, or when you get really up close to an old glass-silverbacked mirror. Happens in my left eye only.

After way too many visits to ophthalmologists and a neuroophthalmologist, someone finally found my left eye has keratoconus. This means the cornea has uneven thickness in places. Which gives you the effect as if looking through an old piece of glass that has a ripple or two in it. Hence the strange, unclear, sort of double vision effect.

Nothing dramatic to worry about. Not much to be done about it, either. Which would not be such a big deal, except my right eye has some much bigger problems going on, the left eye works okay but has this little problem that keeps things from being quite clear.

Thank YOU for keeping us updated; I am also in the undiagnosed boat, and I have DV when I'm tired, that doesn't correct when I cover or close one eye. So I will be following your results with interest.

Tatia

thank yall so much!

winic- that is interesting, did your DV start around the same time you were diagnosed/or had exacerbations with your MG or no correlation?
It seems like mine would have to be related to whatever this neurological condition is since it all started at the same time.. however anything is possible for sure!

Geode- I will defintely keep yall updated... I wish there was a way to get my body back.. even if just for a few years!

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.

I check in here when I can (reading is dang near impossible, usually gives me migraines lately, but I type like a professional so you all end up suffering my long-winded replies) hoping to find some further clues to what is going on with me, and anything that might help me out (I have had to tell the docs what to test or do more than once). Also on some of the other forums here, where again, I kind of fit in but not really, like the thoracic outlet syndrome where mine is the extremely unusual scarring issue without bone-spacing-muscle issues which can be treated, the post-concussion-syndrome forum for my husband, etc. hoping someday I'll find something useful, also trying to help where I can.

I also was originally diagnosed as having CIDP , but a popped appendix put me in the hospital . My stay in the hospital put me under the scrutiny of more experienced neurologists . the diagnosis became LEMS , I have been taking DAP and have been doing much better .
I have not been been seeing double but for the past several months I,ve noticed some reluctance of my left eye to open and a certain amount of soreness of the eye untill I have blinked a couple dozen times . Is the IVEG a transfusion of anti-bodies .
hope you are well , and we can chat more later.