Myasthenia Gravis Support Group

Hi All!

I've had double vision and several other symptoms of MG for several years. I am losing hope that there is any treatment out there that will successfully treat my double vision. For those who have (had) double vision for a good period of time, what treatment did you have that helped?

I know that everyone is different in terms of their response to treatment, but any information would be helpful. I guess I should count myself as fortunate that I don't have more severe symptoms, but the vision issues really impact my day--daily!! It's discouraging to think that I have to deal with this for the remainder of my life.

I've been on high dose prednisone and that did help some, but then the neurologist took me off of it. My body couldn't tolerate Imuran. I've had IVIG and it helped with some weakness, but not my double vision. We're back to trying high dose steroids again, though the neurologist is leaving the final decision up to me.

Hello BernieDot! Double vision is a pretty severe symptom. It can affect everything and when the eyes don't function properly, it seems nothing does.

In as much as I dislike "scare-oids" this medication seems to be quite successful in treating ocular problems. It's finding the right dose, and it's the timing as well, not to mention the "who knows?"

Has your opthalmologist mentioned an eye patch, or prisms?

I haven't tried steroids yet, but neither mestinon nor neostigmine have helped my double vision yet. Steroids are probably next.

MGCanada--I do wear prism glasses over my contact lenses. This helps for the start of the day, but once I get going with my activities, my double vision increases and I can't see single with or without my prisms. I guess I could wear a patch, but I really don't see that as a long-term acceptable solution. It's not just intermittent double vision--it's all the time!!

My neuro seems to think that the double vision is such a "minor" symptom that one needs to weigh the costs and benefits of treating it. I do understand that, but it's frustrating as ****! Anyone that suggests that should walk around seeing double for a day and see how it impacts them. I've had to retire (or really I chose to retire early b/c I couldn't do my job to my satisfaction). It was probably the best decision I made b/c the decrease in stress has really helped to alleviate many symptoms.

Excuse my rant--I'm just feeling sorry for myself. I'm sure everything will look better in the morning--even if it is double. Thanks for listening!

Kage, I hope you get some benefit from using steroids if that's what you need to do to help with your double vision.

Bernie

Bernie, You need never apologize to anyone, particularly to your fellow MGers, for expressing how it is for you and how you feel!

I, having experienced double vision, well, I am shaking my head. (actually I'm getting whiplash..!) How could this physician be so glib as to say that one would need to "weigh the costs and benefits of treating it..." HUH????? I'm sorry....no I'm not...HUH?????

With a great deal of trial and error, and patience,and a well-informed physician, ocular symptoms can be managed and greatly improved.

That you are wearing prisms, suggests to me that you might seeing an opthalmologist--is this so? If not I would highly suggest it, neuro-opthal, even better, if you can find one.

Canada,

Thanks for your post. I was initially followed by a neuro-op, but things didn't go well with that. However, he did prescribe prisms. If I didn't have the prisms I'd be having a much harder time of it.

I'm currently only seen by a neuro. My ophthalmologist helps out a bit with the vision concerns, but I really think they're at a loss in terms of what to suggest.

I'm hoping a second round of prednisone at 60 mg/day will do the job. But again, I feel the docs don't do a whole lot with the ocular issues. They look at me and say, "well, it's only your eyes!!"

You mentioned in your post about steroids and the "timing" of it. What did you mean by that? I'm wondering if the length of time (years) that one has double vision affects the response to treatment?

bernie

Bernie, my neuro also thinks double vision isn't a big deal. While I've exhibited weakness in other parts of my body, the vision is most annoying. He always asks if the symptoms are worth the potential drug side effects. While I like him, it makes me want to tell him to walk a few days in my shoes, then we'll talk.

Kage,

I agree completely!! I've been dealing with the double vision issues not being controlled with prisms for three years. I don't think it's unreasonable to ask my docs to walk even more than a day in my shoes!

Hello Bernie, Timing certainly is related to the length of time that one has MG, in any form. It's beneficial to be diagnosed as quickly as possible. As well, timing can be about taking medications at specific points in the day, and with the support/consent of your doctor, experimentation with dosages is helpful.

Hi All

my double vision was so bad i had to give up my driving job .I tried all the usual fixes with no lasting success . Until i went to a new optometrist and he said he could put a progressive prism on my right lens on the right side and it would work the same as progressive bi focals ,,,, . My vision is near normal again and the prism is invisible . it was the best extra 40 bucks i ever spent