Ocular MG
Hello everyone! I was diagnosed with Ocular MG about two years ago and I hadn't had an episode until a month ago. This is just my second one and it seems to be worse than before. Neostigmine eye drops doesn't seem to be working so I hope that Mestinon will help once I start using it. I have one concern, though, when I currently have an episode. Does anyone wake up with the affected eye much bigger than the normal eye? And as the day goes by, it gets smaller and smaller?
I have had Ocular MG for about 5 years now. I never had my eyes be actually swollen upon waking but certainly noticed that I would wake up with very dry and sore eyes in the mornings. It felt almost as if my eyes were not fully closed when I was sleeping or maybe they were exhausted from moving a lot during REM sleep. Perhaps something similar is going on with you.
Mestinon did very little for me but I know others find it quite effective. A course of 20mg prednisone was able to push me into remission and I was doing well without medication for about a year and half until I had a flare up.
Hopefully either one of those medications works for you!Mestinon, Cellcept, Prednisone worked great for me
For me. Janice, Mestinon (pyridostigmine) was a miracle drug. The very first pill opened my sagging eye in about 45 minutes. I know it doesn't work this well for everyone, but it will work over time. Still, it's a stop-gap med. My experience is that ocular symptoms come and go in the beginning, but eventually come to stay if not treated. And they often will bloom into generalized MG. I mention this because just treating episodes as they come and go may not be what you need to stay healthy. Pyridostigmine just increases the supply of messenger cells to help overcome the flood of bad anti-bodies. It does nothing to reduce anti-body production or prevent damage to receptor cells. Listen to your doctor and if wants to put you on a regular regimen of medication, take him seriously. If you have MG, you are not treating a symptom, you are treating a disease..
Yanni, I have some swelling to both my upper & lower lid. I used to attribute it all to edema, which I also have as a result of hypothyroidism. My upper lid droops a little, as well as "bags" under my eyes. I've been able to reduce a lot of my edema, including ny eyes, but the swelling, though much reduced, is still there.
The research I've done on this indicates MG causes inflammation, which from my nursing knowledge, tells me swelling is involved, too. As far as me awakening to swollen eyes, sometimes yes, they are more swollen, but it doesnt lessen as the day goes on. Usually rest helps.
Mestinon works well for some people, but it didn't for me. I ended up taking it with prednisone. The prednisone worked about 2 weeks later. I've been off both for a while now & am on another medication that works best for me.
Give mestinon a chance. Just because it didn't work for me doesnt mean it won't for you. If it doesn't, talk to your neurologist about other alternatives. Best wishes! - Janice (Myasthenia-Gravis.com Team) @
