[christa]

Just curious what the general opinion is on having glasses made. Something Alice said in a different thread made me wonder if they are even helpful. I have been thinking about having a pair of glasses made to help with the double vision before I get in to a neuro. Does anyone have thoughts on this?

[4-eyes]

If the double vision is exactly the same every day, and has been for several months, yes, it would help. However, that's rarely the case since MG is so variable. I've read of some people getting "stick on" prisms in various strengths that they changed out depending on symptoms, which might also work. Or, if you are bad like I was, there might now be any prism strong enough to help that they could incorporate into eyeglasses.

[christa]

Hmmm. Bummer. I talked to an optometrist last week when I had one of my kiddos in for an appointment (and was having poor vision) and asked him a little about it. He said he'd prefer to see me when I've been "stable" (haha) on mestinon for a few months. So I guess that makes sense. I was hoping for something to help a little until I can get in somewhere!

I usually experience double vision that seems the same, but it comes and goes quite rapidly. Or it doesn't. You all probably know what I mean. Shoot, I'm not even making sense to myself.

So, would it be helpful to say have a pair of glasses in the car (prisms) and throw them on (and off) as needed? Has anyone tried that? Or would it be impossible to write an accurate prescription because of the variances?

4-eyes, how bad was your bad? I have a really hard time articulating this craziness!

[4-eyes]

I had a friend who used a couple of different pairs, and they did help her for a few months, but then the prescription was no longer accurate.

As far as how bad is bad....BAD! I not only would have double, the images would appear far apart and usually one of them would be tilted. I would even have double vision with one eye covered at times, because the individual muscles were so weak that they eye couldn't balance itself. At my very worst, I had one iris pointing to the far corner of each eye and the eyes themselves kind of bulging out, because the muscles were so weak. Typically, tho, my right eye would drift toward my nose (cross-eyed) and sometimes go upward as well, almost being covered by my eyelid. I once took a photo of it, but it was so distressing and depressing that I deleted it.

When DV gets in the range of THAT bad, it really can do a number on your self esteem. Many people would assume I was "special needs" or "mentally challenged," especially when I'd speak with terribly slurred speech. If I had on sunglasses, they just assumed I was drunk! It was terrible and I hope I never return to that condition because I don't think I'll be so patient with others the next time.

Hope this helps.

[christa]

Thank you 4-eyes. So helpful. And I am so so sorry! I can imagine how frustrating and demoralizing that would be. But probably not accurately enough, as I haven't been there.

My DV is mostly side by side images and/or blurred vision. But almost always closing one eye will give me a single image.

Mostly this week I am getting alot of "oh, you must be feeling better! You look great!" And... I'm not. How do you even respond to that? "Thanks. I feel awful?" Such a crazy disease.

[jana]

Since last Fall, I have had "severe" double vision. I see two distinct images -- one on top of the other -- the top image tilted slightly.

I went to a neuro-opthalmologist. He said that my DV was too bad for regular prism glasses -- the kind you order. I got the impression that the glasses would be too thick and would fall off of my nose. The triagular "thingies" that he used to diagnose/correct my weakness were at least an inch at the thick end -- maybe thicker.

Anyway, he DID put stick-on prisms on two pairs of readers for me. Two DIFFERENT strengths -- a weaker prism for earlier in the day and a stronger one for night.

I have been SO pleased with my stick-on prisms. I left his office that day saying, "I can see, I can see!!!!!!"

Stick-on prisms are relatively inexpensive compared to "ground" prisms -- less than $50 per pair, I think -- IF put on existing glasses or readers. I don't know about plastic/lightweight glasses -- I've heard that they can be very expensive.

BTW, my eyes look like Jack Elam's. When I put on the prisms, in a couple of seconds the eye "pulls" back into allignment. It is the most AMAZING thing!!

[4-eyes]

LOL, that's a tough one. I usually just say "thank you" and go about my day. I learned over time that only a very few people (like less than 1%) REALLY want to know! After all, it is possible to look good and be very sick.

[SoftTalker]

Originally Posted by christa

Just curious what the general opinion is on having glasses made. Something Alice said in a different thread made me wonder if they are even helpful. I have been thinking about having a pair of glasses made to help with the double vision before I get in to a neuro. Does anyone have thoughts on this?

Hi Chista,

I am new to the group - not new to MG.

Unfortunately, as variable as MG is - symptoms are so similar yet - so different for each person. You are probably going to get lots of different answers on this question.

True to form, I have been advised differently - by different doctors about using prisms. I have followed my neuro-opthom doc's advice (and advice from a couple of other professionals) and have not ordered prisms or prism-type glasses.

My neuro-opthom doc's reasoning:
My MG symptoms and "degree" of double-vision fluctuate. Prisms may work at one time - and not at another.

My reasoning for not using prisms:
Medication, over-use of my eyes, how my head is positioned (I am not kidding) - and sometimes what I am wearing (kidding) can affect my double vision.

But - based on a previous response to your question - prisms have helped someone here with MG. So don't rule them out.

But personally, I would wait until I saw a neuro.

Good luck with your decision.