I am less than a year shy of being diagnosed with ocular mg, so not sure if I can offer any real suggestions. Double vision was the most recent and prevalent symptom to dominate my life, and why I chose to reluctantly get on a course of steroids on top of Mestinon. The double vision was awful, like I was walking around cross eyed, so I deeply sympathize. Incidentally it only effects my left eye too..wonder if there is a reason for that.

Are you trying to manage the situation without having to get on a course of medication? Or are you currently on one?

Will muscle tension correction only alleviate the current symptom as oppose to managing the disease?

Understand that I ask these question out of general curiosity. I would always prefer a choice of not having to take a bunch of pills everyday for life.

Before I decided to get on prednisone, I would have to cover my left eye momentarily and the issue would pass but only for a second. So not a solution and silly. I bought an eye patch, and minus the insecure fears of pirate jokes, it did work.

However, I am barely two weeks into the prednisone course and I have yet to have any episodes of double vision. I understand that what works so for for me, may not for you. And that corticosteroids have a real cost to taking them. But double vision can really get in the way of life.

Keep me posted if you find any other solutions that work, and vice versa.

Have you tried Mestinon? It should help with Ocular only MG. Probably would do that and avoid a surgery.

Sorry to hear you have MG.
I don't think surgery is an early solution for MG double vision!
Surgery shortens some muscles to try to align the eyes better, but as we have varying symptoms during the day, just like the prisms not working well, the surgery will be unlikely to get the right amount of correction. It is meant for people who have stable misalignment, not varying.

I had severe double vision in my first 6 months that went away after a few months on prednisone as did most of my MG symptoms. So, surgery early on is really not a good idea, as your treatment will likely solve the problem.

I began my double vision coping with an eye patch that I alternated from left for a few hours to right for a few hours. I figured that one eye was tolerable, although I thought maybe gave me 1/3 the vision of two. (I had tried prisms, but with varying double vision, they really wouldn't work).

Next I bought two pairs of cheap glasses through Zenni Optical online for $20 each, and put Scotch tape on left on one pair and right on the other and used those rather than the patch

Then, as I was having ptosis (eyelid droop) realized I could let one eyelid close voluntarily and use just one eye at a time. That worked very good for me.

I also found that driving with one eye, and thus without three dimensional vision, was difficult. I found that if I tipped my head far back and looked out of the "bottom" of my eyes, the alignment came back (no double vision), so while driving when approaching an intersection or worrying area, I opened both eyes, tilted my head far back and saw normally. That only was good for a short time before my neck got tired, but it really made driving feel OK again.

And in about 5 months on prednisone at high doses, my double vision went away.

I had asked an eye surgeon at Mayo Clinic about having corrective surgery, and he said that no eye surgeon who knew about MG would do that surgery unless the person's vision had been stable for a long time as it was "aiming at a moving target."

For now, try using just one eye, and insist on treatment to get rid of the symptoms. I told my neuro I wanted agressive treatment so the symptoms were gone as I had decided I wanted as much normality as possible even if it meant some side effects that would get me in the long term. And my doctor accepted that and so with enough treatment my double vision went away.

I did find double vision the first and often the most annoying symptom of MG. Mestinon did not make it go away, although it "improved" it. But that meant nothing as long as it was there.

I did an in-the-hospital test one day (I was in for breathing problems for MG) and looked out the window at a distant building with my head 1 foot away from the window. I marked on the window where double vision placed the two images of the same building, then took a 90 mg Mestinon pill. And then every 10 minutes I stood in the same spot and marked the separation of my two images of the building. For about an hour they came together as my double vision lessened, but as they never became a single image, I knew Mestinon would not solve the problem.

Prednisone did.

Good Luck
Russ

I know what the double vision can do to you. It took a neurologist to diagnose me and both mestinon and prednisone to help me. I am now off prednisone and my neurologist has me on cellcept and mestinon. So far so good, but the meds did it.

Good Luck,
Jane

My double vision didn't go away until I started Prednisdone.

Seems like I always have a bit of double vision, but it is manageable. Last time I needed an eye patch was a while ago but think I was having a Flair because I overdid.

I also had some prism glasses made that were unusable. I did enquire about surgery, as I was experiencing 4th Nerve palsy in my left eye. I too was advised that the surgery would not be recommended to me.

Can you share your medication treatment plan is today?

Don't want to be intrusive but if you can share your medication treatment plan info. it might aid us in helping you with some possible options.

There are a lot of experienced folks here and Russ, above, is one of the most knowledgeable.

Good Luck.

Scott

For those of us with mainly ocular MG symptoms mestinon does nothing for double vision . Your doctor sounds like they don’t have a lot of experience. Plus eye surgery would be an absolute no at this stage. Sometimes people reach “burn out” phase where the weakness is fixed and that is when that type of surgery would be done. But so early when it is treatable would be completely unethical in my opinion
I have mainly ocular but I just had emergency sinus surgery my eye didn’t act up but the corner of my mouth couldn’t curl up for a while . Still a little weak but hasn’t affected too much beside the drooling . Makes me feel a bit badly about myself drooling but what can I do. Just hoping it gets better soon. My droopy eye hasn’t acted up now in three years.

OP, I'm sad to hear you struggling. I read all the comments on this thread and can identify with every one of them ... especially the driving with one eye except through intersections where I would also tilt my head back.

Anyway ... to answer your question with my experiences at least, prednisone fixed me. However, one does not want to be on significant doses of that for life as it will cause other challenges down the road.

What I did manage to do through life style changes was to be able to reduce my dosage down to 10mg per day ... which is only a little more cortisol (I think) than your body makes naturally. So my future challenges will hopefully be negligible.

The life style changes don't come easy. I had to give up a lot of things I love. Anything that encourages those nasty little free radicals that get your immune system juiced up must be eliminated or reduced as much as possible.

For me, it meant beer/whine/gluten/metal cooking utensils/non-organic foods. Mostly boring foods, or ones with heavy anti oxidants. Sounds awful ... and it is, or at least much more work and social limitations.

I still struggle with it, but before, if I tried to taper the prednisone, my right eye would slam to the side like a tilted pinball machine. Now I'm able to maintain normal vision with only a 10mg per day ... so, it's worth it.

Another thing ... and there is no exception. Stress is a monster. Kind of a paradox when the worse my symptoms got, the worse I stressed over it. I'm trying to sell out my big city life and follow a simpler life for the rest of my days (this is still a work in progress). One other thing I cannot emphasize enough is the need for consistent rest. When I lose a bunch of sleep because of social reasons, working too much, a long flight, I will likely pay for it with a crisis (Tilt, game over until you put in another quarter ... or extra 15mg of prednisone).

What I would not do is consider eye surgery until every other option has been tried ... really tried.

Anyway, good luck. Hope you find relief with someones advice.

Mark.