Occular Myasthenia Gravis

Posted by Kevin @kevin, Nov 12, 2011

I have been treating this autoimmune disease the past 8yrs mainly with
prednisone.starting @60mg and tappering after my double vision
is under control.
I need to back off on the prednisone and use a combination of another treament .Mestinon does not seem to help ether.
Does anyone have a treatment that works good for them?

i believe there’s a mayo video on myasthenia gravis, not sure if this is the same area where you are affected. i looked at it quickly as i was looking for info on leukodystrophy. the videos are very good, not sure if you’ve viewed any. good luck with your search

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Hi Kevin…I’ve had MG for about a year…I also find Mestinon doesn’t seem to help that much. I had eye muscle surgery last summer in the left eye.. No help. My eyes have gotten worse, so tomorrow I will have both eyes operated on in an effort to help.. I have surgeon from The Kresge Eye Institute here in Detroit who has operated on MG patients before. I don’t know if surgical intervention is an option for you, but you may want to ask your doctor.We’re very optimistic about tomorrows surgery…best of luck to you!

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@seashellgal

Hi Kevin…I’ve had MG for about a year…I also find Mestinon doesn’t seem to help that much. I had eye muscle surgery last summer in the left eye.. No help. My eyes have gotten worse, so tomorrow I will have both eyes operated on in an effort to help.. I have surgeon from The Kresge Eye Institute here in Detroit who has operated on MG patients before. I don’t know if surgical intervention is an option for you, but you may want to ask your doctor.We’re very optimistic about tomorrows surgery…best of luck to you!

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How successful has your op been, seashellgal?

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Hi Kevin. My Mum has MG. I don´t think there was any ¨treatment¨ as such for it; it was simply a matter of waiting—and hoping it would not progress too far. Fortunately, after a time it stabilized and now she wears a prism glued to one of the lenses in her specs to correct for the double vision. There has been no progression for about 5 years now, though there is no guarantee it will get no worse.

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