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    • #17757
      Michelle
      Participant

      I have ocular MG and have been struggling over that last year with what to do to see better. I also have extreme photosensitivy.

      I have tried different sunglasses, even glasses with pink tint. I have also tried an eyepatch. I’ve heard of glasses with a “crutch” that keeps the eye open. I’ve heard of taping the eyelid, what tape do you use?

      What are some things others have done that are helpful?

      Thanks in advance for your ideas!

    • #17763
      Deb Hansen
      Participant

      I had severe ptosis of my right eye lid (drooping so much I couldn’t see out of it) that I had surgery that resolved that problem.  For the vision I had been on Mestinon for awhile which had gotten me to about 75% of the time I had clear vision (but I was taking quite a bit per my neurologist).  I had a pretty bad ‘relapse’ over the summer when my vision was only clear about 25% of the time.  My neurologist put me on Prednisone, tapering off within 6 weeks and my vision is amazing!!!

    • #17765
      Charles Karcher
      Participant

      I was initially diagnosed with 4th Nerve Palsy.  My opthamologist said if it did not get better on its own than we would try Prismatic lenses.  I still have double vision but not to the point that I need those.  You might ask your neurologist or if you have an optometrist or opthamologist you trust if this might help you.

      • #17774
        Michelle
        Participant

        Thank you, Charles.

    • #17768
      Rick B
      Participant

      I have double vision and was recently prescribed Fresnell prism press-on lens.  It is a soft piece of plastic that sticks like a decal to one of my eye glass lens (I wear eye glasses).  The lens immediately corrected my double vision and I can finally drive again.  I took a prescription from my ophthalmologist to an optician and was ready to go in 15 minutes. It cost only $30.00 (although I received much higher quotes from other opticians so shop around; and not all opticians sold them). If you don’t wear glasses I am sure an optician can sell you glasses with plain plastic lenses. I tried glasses with the prism inside the lens but that cost hundreds of dollars and made my double vision worse. Try the press-on lens first.

      • #17772
        TheresaG
        Participant

        The ground in prisms on glasses I found way better than stick on ones, in fact the stickies did not work for me and caused migraines.
        I get my glasses at Costco, and it only adds $30-50 if you want them permanent. I pay $129. Total for new prism prescription lenses, with all the non glare goodies etc.
        I Also have them reuse frames as my sight is constantly changing with new meds etc. gets expensive for sure.

        • #17889
          Thomas Arndt
          Participant

          I am a member from Germany, 69 years old and for three years I have had permanent double vision. My ophthalmologist prescribed me permanent prismatic glasses, which have so far worked perfectly. But unfortunately, my vision is getting worse and worse and I suspect that soon the prism glasses will no longer help either. My neurologist prescribed half a tablet of Mestinon (90 mg + 90 mg) twice a day and an additional 60 mg in the evening, but I don’t have the feeling that this really helps. An attempt with Prednisone (30 mg daily for 2 weeks, then 5 mg less per week) did not yield anything.

          Unfortunately, there are few information about ocular Myasthenia. I would therefore be interested in which medication has improved double vision in you.

        • #17890
          Ronald E. Clever
          Participant

          <p style=”text-align: right;”>As far as the double vision I still have that and it has not improved.</p>

        • #18011
          Thomas Arndt
          Participant

          Seems that we have the same problem. What medication do you get?

      • #17775
        Michelle
        Participant

        Thank you, Theresa.

      • #17777
        Michelle
        Participant

        Thank you, Rick.

    • #17769
      John Gore
      Participant

      Charles is right on! Prism glasses for me worked immediately. Wasn’t until I had a firm diagnose of OMG and a few days on pyridostigmine was I able to see good without the glasses.

      • #17776
        Michelle
        Participant

        Thank you, John.

    • #17795
      Raymond Nelson
      Participant

      Here are two tricks that work for me although not particularly elegant.  I wear glasses when using my computer and sometimes have double vision.  Have found that I can correct it by bending the frame of glasses so they sit canted on my face.  In effect I am looking out of the top of the left lens and the bottom of the right.  Individual results may vary.  When I am driving and bothered by double vision the trick of rolling the head all the way back and/or dipping the chin works for me.  I can regain good vision with head in normal straight ahead position by rolling my eyes in a circular motion for a few seconds.  Seems to loosen up the eye muscles so they can operate normally.  Be sure to do this safely when driving.  As I said, not elegant but works for me.

      • #17815
        Michelle
        Participant

        Thank you, Raymond!

        I too have double vision off and on and know the head lifting and lowering trick well! Definitely not elegant!

        I love your sense of humor – individual results may vary!

        My best wishes for you,

        Michelle

    • #17807
      Deborah A Dortzbach
      Participant

      I can relate to many of your concerns–with driving, eye fatigue, feeling droopy eye, sun sensitivity. Here are some of my tricks and lessons and go-tos. Always keep eyes moist–my opthamologist recommends RefreshPlus eye drops and I always have them in my pocket for use multiple times a day. Take multiple breaks from computer, phone, TV, reading, etc. I have even pulled off the highway at night for breaks, just for my eyes. Even 10 minutes helps. I have to actually close my eyes and rest them for a full 10 minutes, not just “take a break and do something else. I asked my neurologist just two days ago about the effectiveness of pridostigmine when used just “as needed” for symptoms. “Yes”, she said. It can be used that way and be very effective. So, I do–when I feel “droopy eye” coming on, I just can use that drug and feel much better. I recommend asking your neurologist the same. Just by way of information, I am on 2000 mg of CellCept daily and now a maintenance dose of prednisone of 2 mg daily. It seems to be “holding me” and I swim in a warm pool regularly which helps my overall physical and mental state tremendously.

      • #17816
        Michelle
        Participant

        Thank you, Deborah!

        I appreciate your feedback.

        I’m bad about taking breaks, so I need to actually set reminders for myself.

        I will try the eye drops, too.

        I have never heard of CellCept or been on prednisone. I have only used pyridostigmine.

        Your additional information has been very helpful to me.

        Thanks,

        Michelle

        • #17821
          Matt Sereby
          Participant

          cellcept is an immunosuppressive drug whereas pyridostigm is not. I am scared of getting on immunosuppressants until I absolutely have to.

    • #17808
      Mike
      Participant

      Hi, Michelle. I had my first instance of droopy left eyelid a few months ago. Initially I would hold my eyelid up, while driving, with my left fingers. That got old and useless quickly, even on short drives. I got out the scotch tape and tried taping my eyelid to my forehead. That seemed to work much better. I would place the lower end of the tape just below my left eyebrow, pulling up as needed before attaching the top end to my forehead. I used this technique until the drooping decreased to the point that I didn’t need it (around 3-4 weeks later). Besides driving, I also would tape up my eye for TV viewing. The scotch tape is hard to see, so it doesn’t look so bad in public. If I went shopping I would wear a baseball-style hat to cover my forehead and pull it down slightly to reduce visibility of my raised left eyebrow. I was diagnosed only recently and came up with this on my own, so if there are other better solutions for drooping eyelids, I’d sure like to hear other peoples’ ideas. Thanks! Mike

      • #17814
        Michelle
        Participant

        Hi Mike,

        Thank you for your reply!

        I am still holding my eye open while driving and it is very old! I’ve been dealing with this for a year now and you’re right! It is very old.

        I am going to try the scotch tape method right away! Hopefully, it will give me more freedom to drive, etc!

        Best of luck to you in your new journey with MG.

        Michelle

    • #17812
      Matt Sereby
      Participant

      I also have vision problems and have prisms 7 and 3. The lens on the right is a coke bottle thickness! My right eye droops so bad that my optometrist cannot provide me with a quality eye exam. On my last check up a couple of weeks ago my eye would not stay open. Once it gets to where I am looking through my eyelashes it simply closes. She had a sample of a new eyedrop called Upneeq which she tried in my eye. It did open it enough for an eye exam but I am not sold on it yet as I still walk around with it open just enough to not see my eyelashes. Have been on it for about a week. Not covered by insurance and runs $105 a month available from the manufacturer by prescription only. I don’t know what my neurologist would think of it but he has been no help in this journey. As for glasses I am 63 and tough on glasses so I purchase from Eyeglass Mart which is national. A plastic frame with progressive lenses and prisms galore run about $90.00. There are days I have used a patch when driving but my other eye is not strong and then gets tired. I then would switch the patch over to the unaffected eye. My tip is never to do that because when you sneeze or laugh or yawn your other eye closes and as we all know won’t open again without help or time. It’s a scary moment with both eyes closed for a few seconds Oooops!

      • This reply was modified 1 month, 1 week ago by Matt Sereby.
      • #17817
        Michelle
        Participant

        Hi Matt,

        Thank you for your reply!

        I appreciate the great information.

        I just saw Upneeq advertised and wondered about it. Glad to hear from someone who has tried it.

        Does using the eye patach at other times help your visio?

        Thanks, Michelle

    • #17822
      Boral
      Participant

      I have a similar problem, thanks for sharing the tips.

    • #17844
      Ronald E. Clever
      Participant

      I have had double vision from the beginning of my journey. My ophthalmologist is the one who had me tested for MG.  I have always had prisms in my glasses so that I can drive. I am fortunate to have great insurance from the union I work for. My right eye drops more than my left but I never really noticed until I started reading again and now it presents a problem. It has not closed off completely but I am always looking through my eyelashes. My glasses would cost about $1300 if I didn’t have insurance and still set me back around $500 but I can’t be without them since I commute 90 mins each way to work.   Luckily i have “readers” for use on the computer.. it seems the double vision only effects my long distance.

    • #17891
      Matt Sereby
      Participant

      Just an update on the Upneeq product that I was using. After a month I have found it is totally ineffective. Seemed to work in the optometrist office but went downhill after that. Not to say it won’t work for others, but it is not for me.

      • This reply was modified 2 weeks, 5 days ago by Matt Sereby.
    • #17902
      Matt Sereby
      Participant

      At my opthalmologist/surgeon to discuss eyelid surgery as it stays closed involuntarily most of the time. Seeing what his suggestion is. Didn’t know there were so many types of surgery! I will keep everyone posted as to how it all works out

    • #18014
      Thomas Arndt
      Participant

      Hi,

      I have had double vision for almost three years and have been using prism glasses for 1.5 years, which usually help. Since I work a lot on the computer and mobile phone, my eye muscles tire particularly quickly.

      I read on the internet that vitamin D in high doses was a successful treatment for Myasthenia in Brazil. I have therefore read a lot about vitamin D and it has convinced me that adults need 4000 UE a day and older people double that amount. For almost a year now, I have been taking 5000 units a day, now 7000 units. That is still far away from the high doses which were used in Brazil. As a precaution, I have my vitamin D level checked every six months, so far it has always been in the average range.

      For a month now I’ve had the feeling that my eye muscles don’t tire as quickly as usual. Of course, I cannot say whether this was due to the vitamin D administration, but I suspect it was.

      After everything I’ve read about vitamin D so far, I can only advise everyone to give it a try. My hope is that in the long run it could bring relief from the ocular Myasthenia symptoms.

      Of course, everyone has to decide this, I would also discuss this with my neurologist.

      Thomas

    • #18038
      Kelly Criezis
      Participant

      A six week course of prednisone put this into remission for my husband as of now since October

    • #18040
      John W Carnahan
      Participant

      I have had ocular MG since 1974 without any period of total remission, but I managed to work through the double vision and ptosis by wearing an eye patch off and on. The biggest problem was the inadequacy of commercial eye patches. My wife and I figured out a pattern that allowed total covering of the eye (they switched back and forth sometimes, so I went to work one day with my left eye patched and the next with the right eye under the patch)and she cut out the patches and a thin cardboard liner, sewed them tougher and attached a thin elastic band. We must have made hundreds over the years because after a while, because of perspiration or wear and tear, they needed to be replaced.

       

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