I have many vision problems but not that exactly match yours, but I think neuro opthamologists are our friends. Have you been?

No, I haven't been - I did mention the spinning thing to Neuro #1, I think that went on his "Crazy Lady" list! lol! It seems to happen if I've been pushing myself right at the start of my symptoms flaring which is why I wondered if it was related - but it could just be a coincidence. I only have 2 more weeks until my RNS/EMG so I suppose I'll wait and see what happens there...dreading it is not the word!

Thanks Elinora :) x

My eye problems are exacerbated by activity and heat. Good luck with your tests! May you find answers. Big hug.

Yes, yes and yes! I do have those symptoms and understand. A neuro ophthalmologist appt
might be appropriate. If nothing else, to put your mind at ease.

-sherry

You can have lots of strange visual problems with MG that are hard to describe (and believe) because small changes in small muscles make a big difference in focus and alignment. Since the problems are intermittent and usually asymmetric, it makes for interesting viewing like ghosting that is not only doubled but skewed. One neurologist got impatient with me while asking how far apart certain lights were and I really should have said if you would hold them so they stayed in the same place, I could tell you. I was waiting for them to quit moving as my muscles weakened and then tried to superimpose the images. Sometimes the doubling is just in the periphery and that can make for interesting visual experiences (if you like that sort of thing) or can be annoying or scary. As elinor says, neuroophthalmologists are often our friends, they have seen and heard all kinds of strange things. Mine made the comment, "Only people with MG see things like that."

Hang in there! b.

Oh guys I'm having awful eye problems, but didn't consider that they might be MG related. About 6 weeks ago my optometrist was doing a glaucoma test and at some point she decided to check my vision? Now my prescription in glasses was only 6 months old but she noticed a marked decline in acuity in my left eye.

O.K. new corrective lens ordered but I could not wear the glasses....felt like my eyes were being pulled out. O.K. second try with changes to correct plus three prisms. Nope couldn't wear those either...again pulling but even worse, when I took them off? Double vision. (Along with ptosis my initial symptom of MG, 8 months ago).

I'm now awaiting the third try, which will be back to where I started lol. Now I won't have 20-20 vision with them, but more than adequate to get around.

Could this be muscle weakness refusing to let my eyes adapt to what they need?

Eve, I don't think you're crazy, unless all of us are? : )

Thank you all!! To be honest I wasn't really expecting anyone to understand what I was talking about...Neuro#1 just gave me a strange look when I told him so I just kept it to myself from there and assumed it was some sort of weird anxiety!!

Sherry - I officially Love you!! Your reply shocked me - I am so happy that someone knows what I'm talking about!!!

B - Thank you as always!! You always have the knowledge and know what to say!

Thank you arniebb2 - I really hope you get things sorted! I'm sorry I can't offer any help but I'm sure others here will know far more than I do about your symptoms.

Hopefully the nerve/muscle tests will give some answers - they are planning to do them on my face so it may show something as my problems are mainly facial....NOT that I'll be getting my hopes up!!

Thanks again everyone!x

Eve your not crazy at all....most of what has been said here I have experienced especially the crazy vision and the rapid change in my glasses prescription.

As Bweeds pointed out small changes in our eye muscles results in a change in tracking of our eyes, that can drive us nuts.

We have to think about our 2 separate eyes as 2 separate cameras that need to be pointing at the same exact point to get the same image, otherwise our poor brains have a tough time sorting out what we are seeing. If the 2 images do not line up, this results in not only fuzziness but strange shifts in shapes for some people as our brains try to process this.

This is made even worse if the condition is changing. Our brains can adapt some level of offset as long a it is constant, the problem is MG is never a constant.

It's no wonder so many people with MG have headaches of various types.

Nope your not crazy, actually right on

Joe

Thank you Joe for your lovely reply and your insight. I have always felt that I had no real eye symptoms apart from the mild droopy lid and very occasional and brief double vision (...although at times I feel like I am on the verge of double vision, like my eyes are about to go, if that makes any sense!) but after this maybe I am having some mild eye symptoms after all....and am a little less crazy than I thought?! Lol!x

Eve your certainly not crazy my friend you just have expressed here what most of us experience each day

Thank you for helping us realize this

Joe

Your not crazy, welcome to our world, MG has lots of treats , hang in there, Charlie

I have had a lot of blurry vision off and on, and sometimes after I get plasmapheresis it seems like I have out on a new pair of glasses.

I have vision problem. My vision is blurred sometime and then at times it's like I see something when really it's nothing. I have Glaucoma, which may be the problem. I also get headaches above my eyes.

Arniebb instead of a Optometrist, I would try an Opthomologist Specialist.

You are not crazy unsure. I hope things go well for you. God bless! Cabbage7

Eve, if this puts you on the crazy list, I would have to join you! Vision problems are what led to my MG diagnosis. I tried several different eye doctors (two of them ophthalmologists) trying to find the magic pair of glasses that I was sure were a possibility. (I wish!) My current eye doctor is the one that first mentioned MG as a possibility and ordered a blood test (which was negative by the way). My neurologist then sent me to another neurologist who did the RNS testing and a Tensilon test, both of which were positive. Neither test was fun, but it was a relief to have a diagnosis and something to move forward with!

In my case, my left eye is the problem. My left eyelid droops slightly and sometimes sticks a bit when I blink. My left eye also wanders a bit and gets blurry, especially if I'm outside or in the car on a sunny day. Usually when my vision is acting up, covering my left eye allows me to see clearly. Moving my hand back and forth in front of my eyes makes what I'm looking at move up and down. I have had episodes looking at data in Excel at work when my eyes are actually tracking different lines in the spreadsheet. Columns where the numbers were the same between lines looked crystal-clear, while columns where the numbers were different between lines looked blurry. So when this happens, I sit in front of my computer with my chin in my left palm and my left fingers in front of my left eye... I can't watch TV laying down on the couch anymore, because somehow laying down and looking at the TV sideways really exaggerates the double vision. For what it's worth, this kind of double vision is called binocular double vision, because each eye sees clearly on its own, but the eyes don't want to work together properly. And, it took three tries this year to get a pair of progressive bifocals that worked... It's hard to get a pair of glasses that work well (at least most of the time) when your vision measures up differently each time you see the eye doctor, and for that matter varies quite a bit as the day wears on!

Welcome one and all to the crazy train. I've hitched a ride and I think that all snowflakes should join me. LOL So many doctors have told us that it's all in our head that we have become somewhat crazy in our own right. (Note: Please disregard the obvious sarcasm here. It's purely for entertainment sake and is in no way meant to be insulting or disrespectful to other crazy people. Personal references are available as verifiable proof that I am a trained "crazy lady" handler. Should you need their contact information, send me a private message and I can get you the phone numbers for my mom, older sister, "Crazy Aunt Peggy, and many, many more.)

Honestly, if you are experiencing it then it is likely that many others here are too. My own vision has been a mess for many years. I can do an eye exam and do just fine if I'm at my peak with the mestinon but just an hour later, as the mestinon wears off I can hardly read a word on my computer. It's also like that no matter how large the print is. It seems like everything has a shadow or halo sometimes but it's so much worsse with a migraine.

Please don't be afraid to ask about all of those things that you are wondering about. We do not judge and we can all relate to the challenges that you face.

Before my diagnosis last year (about this time) I was truly beginning to believe that these symptoms were all in my head. There were so many things that I just couldn't explain and had no words that were adequate to describe the issues to my PCP.

Just today, I scheduled an appointment to see a local neuro-ophthalmologist next Wednesday. I did not share the fact that I have MG. I am really hoping that they come up with that diagnosis on their own. i won't deny it if they ask but I don't want to offer that up initially. I don't know why really but I want to see if they can confirm the MG based only on my eye exam.
Anyway, I would recommend that you do the same and schedule and appointment. I think that all of us with ocular symptoms like the ones you've listed should see one. Please let us know what you figure out. I'm very curious to see what the outcome is.

Okay everyone, I'm slowing this crazy train down a bit so that I can tuck and roll myself into bed.

I hope you all have a good hump day. Hugs and love to all.
Angie