To those with optical MG
 

Just wondering how bad your double vision was and if the meds fixed or helped it?

I've had double vision for over 6 weeks all day long. My left eye does no move all the way left and it doesn't move with any speed. Some of my prism numbers were as high as 18. My neuro didn't seem very confident that I would ever get my vision corrected, he sounded hopeful that the meds would help it enough for me to wear glasses.

I had terrible double vision. In fact, I've never heard of anyone with dv as severe as mine. My opto said there are not prisms strong enough to correct mine. I would see two images, totally separated, and usually the right one would be at about a 30 degree angle. If one would look at me during my double vision episodes (which would last 20-30 days at a time), I would either be totally cross-eyed, or totally looking toward the outside of my vision, or one eye rolled upward where it was barely visible, or any combination of the above.

It was disorienting and terrible for my self esteem. The double vision, combined with facial weakness and slurred speech made me appear either mentally challenged or drunk (as parents as my daughter's school readily told me after my recovery following the chemo).

Prednisone can often improve double vision, as mestinon doesn't usually do a very good job of it. Early on in my MG life, prednisone restored my vision for a couple of years, and then the MG came back with a vengeance and nothing would help.

I wouldn't take to heart what your neuro said about your vision "never" improving. It's amazing how things can improve with the right med or combo of medications.

Hang in there!

Mine is also bad enough when I look to the left than the prism size is at the very bottom of what they have.

Appreciate the info

Just learned that a guy who used to live in my house has ocular MG, ironic. He was taking 5 mestinon at a time and it helps him:eek:

I've been on prednisone for 2 weeks, hopefully ill "see" improvement soon.

I had severe double vision for the first 5 months after I started getting MG symptoms. My double vision was so bad I couldn't see anything at all besides colors that moved around, because neither eye would work properly...every once in a while I could see out of one eye if I covered the other. The mestinon helped slightly in the beginning, but it wasn't until I lowered the dosage in increments during the 5th month that my double vision went away. I wonder if it was the Mestinon that helped but that it took 5 months to be helpful, or maybe I was on too high of a dose initially. I still get double vision now, but it isn't very bad compared to those first 6 months. I only took Mestinon to help with my symptoms.

I believe IVIG helped my double vision. I couldn't drive for 11 months. I have taken Imuran (1 year), Mestinon (420mg a day), took prednisone for 3 weeks and get IVIG every 2 months. I'm getting ready to start Cellcept. My neuro agrees it was the IVIG that improved the double vision. I believe it was my second treatment that did it.
Mike

I don't have double vision, but I just wanted to add my experience to Mike's. I have had (so far) two IVIG treatments. The first one didn't do much, but the second one helped dramatically. I have the sense that this is pretty common. So if you do have IVIG and it doesn't seem to help much, don't give up on it immediately.

Abby

Optical Problems
 

I have been battling MG for about 2 1/2 years and have experienced double vision problems twice. The first happened shortly after my thymoma was removed while I was still in the hospital. My experience is both my eyes totally lock to the point where I cannot move them at all. I was given predsinone and that cleared up the problem. But my neuro did not continue with the predsinone after my eyesite was corrected.

Then about five or six months later it happened again. This time my neuro decided to try two IVIG treatments (knowing that I had already had four IVIG treatments since my first diagnosis with no positive results at all for my total MG condition). So for two months I really suffered with the double vision to the point that even wearing an eye patch did not help. I couldn't eat and was so sick to my stomach that I finally ended up in the hospital again. He started me again on prednisone at a low dosage and worked me up to 60 mg a day. In a matter of a couple of days my eye site returned to normal. Why he didn't do that instead of the IVIG treatments is an amazement to me.

Since then we have been slowly reducing the daily dosage and now I take 25 mg one day and 5 mg the next. I'm afraid I'll have to be on prednisone for a long time as a maintenance. That's not too good but what can I do. I can't take Mestinon (tried once and ended up in ICU for a week - I'm allergic).

Good luck finding a solution to your eyesite issues.

Southern Bell
:grouphug:

I've had double vision for 9 years. For a long time the prism glasses mostly helped except when I overextended myself--and then everything got worse. I've been on various treatments for less than 1 1/2 years.

Prednisone helped some, but then the doctor didn't want me to stay on it long-term. My first IVIG treatment last year (while on prednisone) totally cleared up my vision for only a few short days, then back to seeing double. I am now getting a 2nd IVIG treatment. I had 2 days of IVIG last week that helped immensely with the muscle weakness. I'm scheduled to have 2 more days this week. My neurologist hopes that it'll help my double vision. I'm keeping my fingers crossed.

I've tried Imuran and wasn't able to tolerate it--my white count dropped down too low. My dr. is talking about starting me on cyclosporine.

Hang in there. Everyone is different in terms of how they respond. Keep us posted on how you're doing.

Cate

I have had ocular mg for 15 years and have severe double vision and droopy lids for all of them. I initially was treated with high dose prednisone and other that a lot of side effects i had no improvment. I am currently on cellcept for the last 7 weeks and my double vision is getting worse. My doctor thinks that this is normal to get worse before better. I am curious about IVIG and if it would be effective. I have no response to prednisone or mestinon :( I have just learned to cope with the double vision and droopy lids. I would love anyones feedback, ideas, advice, etc ....

15 years, wow that's rough. Are you wearing a patch or glasses that block out one eye? Also any worsening vision in either eye individually? I only use my right eye because the left doesn't move much, my right eye has been getting worse and worse, started at much better than 20/20 and now its not even 20/20.

I don't have any news yet, prednisone for 3 weeks and mestinon for 4 and no change whatsoever. A guy local to me was told by his doc to take 300mg of mestinon at a time and that worked for him, not advised for most people. I've taken 180mg at a time with no change good or bad.