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...

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Ocular Myasthenia Gravis

CarolinaMoon1946
CarolinaMoon1946
Anyone out there dealing with only Ocular MG? I was diagnosed 60 years ago with MG but it remained in my left eye all these years. Then suddenly, last Sunday morning, April 15, it showed up in my right eye....big time! Struggling with it all week. Compared to many of the stories I have read and heard about, mine has been a milder case since it never generalized but even then, it is very difficult to deal with.Have done a lot of research on line thru the years and it appears that Mestinon is the drug of choice. I've taken it through the years and I've started taking a lot more this week, awaiting an appt. with a neurologist. I would like to visit with anyone who has had Ocular MG for a number of years? Thanks for your help!!
kman
kman
I have had it in only one eye for 16 yrs.
CarolinaMoon1946
CarolinaMoon1946
Do you take medication for it or how do you handle it?
Rhanson
Rhanson
My MG started with just ocular (double vision), moved to eyelid droop, then chewing problems, and then general weakness and finally breathing problems in about 3 weeks from start to hospitalization. Doctors never know if we will progress or stay at ocular, so start with mestinon and see what happens.
The general medical statement is that about 90% of folks move from ocular MG to generalized. However that means 1 of 10 don't. And of course, one does not want to take the harsh immune system treatments if they are not needed.

These statistics are interesting -- the 10% who stay in ocular. In my case, I am in the 15% who go into remission after the first bout with MG (about a year after I had severe symptoms).

One never is sure if they are in the 10 or 15% of folks without some testing of what happens without the medications. So the advice I got was try to get MG under control with meds, and then keep trying to taper them down just in case I wouldn't need them.

It was a scary thing to do, as MG was quite terrible uncontrolled for me, but I also didn't like the side effects of prednisone and mestinon, so was willing to keep weaning myself gradually to see what would happen. And after a year I was in the 15%.

Good Luck
CarolinaMoon1946
CarolinaMoon1946
I was diagnosed at the age of 5-1/2 years of age and I am now 70. My Ocular MG has remained purely ocular all these years. It was in my left eye for about 60 years and then 4 years ago it started to affect my right eye. Mestinon is the drug I was prescribed when I was a child and is the only drug I have taken. The ocular MG has gone in and out of remission across the years but this last bout of almost 4 years is the longest it has remained active. I live in Springfield, MO. I see a neurologist at Kansas University Medical Center. In fact, I have my annual appointment on Monday. Unfortunately, not much money is thrown at research for MG since it only affects a small part of the population but I see my neurologist once a year to renew my prescription. Also, I am getting my Mestinon from Canada because it is much cheaper to order my drugs from Canada without a drug plan. I have a very good drug plan but it's still cheaper to just pay for the drugs from Canada than use my USA plan. I've chosen to not use steroids because of all the side effects. I guess because I have lived with the problem so many years that I have learned how to deal with it. But it still drives me crazy!
Lataplat1
Lataplat1
I have some questions! I am in the process of being diagnosed with ocular MG. I have been going to my do, nuero, and nueroOpp for about 2 months. My main symptom is droopy eyelid. I don't have many of the other symptoms. All my tests keep coming back negative. Unfortunately the MUSK antibody test is not covered by my insurance. They started me on Mestinon but after a week it didn't work so they want me to take about 4 more pills for another week to see if it works. I just want to know if this is typical. I hate drugs I don't even take Tylenol or anything. Is there any natural solutions anyone has tried? How long does it take for the drugs to work? Will I need surgery on my eye? Is therected any other testing typical for ocular MG?