Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Still new to this MG thing. Started to see symptioms late Feb of 2019 and diagnosed in late July / early Aug. One of the first symptoms was double vision.
Just got my eyeglass prescription that included Prisms to correct the double vision. Put them on and my vision seemed worse with the new glasses than without.
Am going back to the eye doc that wrote the Rx to verify grinding and the prescription.
Was wondering -
How many here have successfully used prism glasses and how many have found them NOT helpful.
Thanks in advance to your responses.
When I saw my eye specialist (Mayo Clinic - Rochester), he said that prisms work for some folks with MG, but only those how have stable double vision. Most don't he told me.
My double vision varied with the time of day, with the mestinon dose, and so was not stable and therefore a prism might be useful at times, but not likely to be suitable for regular use.
The eye specialist told me to sit down with his box of prisms (actual glass prisms) and play with them until I found one that seemed to bring my double vision into single best with the least eye strain. None were perfect, but one seemed better than the others.
Then he gave me (free) stick on Fresnel lens for my regular glasses and said "go home and try it and then if you like it come back and we can have a pair of glasses made with that built in." The Fresnel lens was not perfectly clear (plastic) and so having it built into the glasses would make it better for clarity.
I found that about 1 hour after I took a 60 mg mestinon pill, for about an hour it worked somewhat to resolve the double vision, and then went away. So I put it on a spare pair of glasses and sometimes used it.
As prednisone resolved my double vision in about 6 months, I no longer had problems.
The worst thing that some eye surgeons do, in my opinion, is do surgery for double vision with MG patients early on. Then if treatment does work, you have to undo the surgical correction.
I had several eye tests during my MG first year trying to figure out better vision, I found an online company, Zenni-optical that made excellent cheap glasses ($10-50) and had pairs made for computer, for driving, for the stick on prism, reading etc. When you take the cost out of the glasses, it makes experimenting easy. I had one pair with the left eye covered with Scotch tape and another with the right eye so I could use them for times when I otherwise would have patched one eye to get by
By the way, if your glasses don't work, reputable eye doctors will fix them free until they do work. So go back and say you need something different -- and ask about test prism stick-ons. .
My MG is still in remission, but prednisone did push along my cataracts so I had the cataract surgery and now with my astigmatism corrected and excellent distance vision, I only use cheap drugstore reading glasses.
When I was in the neuro unit at Mayo for breathing problems early on, I did a double vision test,
Before I took my morning mestinon, I looked at a distant church spire through my window and marked on the glass how far apart the two spires (double vision caused) I saw were from standing 2 feet from the window. Then I took 120 mg of mestinon and every 15 minutes re-marked the window. At about 30 minutes the two spires began coming together and at one hour they were just about one image, The image gradually separated again and at 4 hours was back to the original separation That kind of variability meant there was close to 2 hours of decent vision, and two hours of varying vision I didn't like 120 dose side effects, and so took 60 mg which never got rid of double vision completely,
Good Luck
Russ
Great comments.
When I received the Rx for the prism glasses I was hopeful but understood that many times the eyes change daily/hourly and that they might not help. I think that I fall into that category.
I, again, am fortunate, as I was able to get one pair of glasses, without prisms and one with them. One pair paid for by my Supplemental Medicare and one from the VA. The one from the VA have the prisms.
My eye Doc. did not say that the prisms would solve my double vision but felt they might be worth trying. Will be seeing the eye Doc again in the coming days and we shall see what she says. I will ask about the Fresnel prisms.
I will probably have the VA pair remade to NOT include the prisms.
Your suggestion re: Zeni-Optical is one we shall consider.
Having my 4th IVIG next week, then meeting with the Neuro. Am guessing that my treatment plan will change somewhat. We shall see.
I still consider myself fortunate as this disease has not progressed past double vision and significant fatigue.
Thanks again for your comments and support.
Scott
I live in southwestern Pennsylvania. This last week I have been reveling in walking in our cold, below-freezing weather. With my prismed glasses and Mestinon and the cold, I can see so clearly! Passersby must think I just fell in love, I am smiling so much. :-))
- Nan