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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Mestinon Question

kaicee118
kaicee118
I am new here, and I have a long history of trying to diagnose this disease, which I won't go into now.

I am currently on Mestinon and I have a question. Even when taking the medication, can your symptoms still fluctuate? Like, some days my eyes feel really good on it, and some days, like today, my left eye is drooping which is causing some diplopia.

Since I'm having trouble confirming an MG diagnosis, I just wanted to ask if this is normal for MG. Thanks! Glad I found this board.
deleted_user
deleted_user
Hi Kaicee,
Absolutely your symptoms will fluctuate. I take mestinon every three hours each day and every day I feel different. When I'm having a bad day, I move up my next dose by half an hour to try to compensate.

Some days my speech is slurred, some days I'm OK. Some days my eye lid droops and sometimes it's almost normal. Some days I can go upstairs without a problem and some days I get winded. I've only been in the "MG club" since February but the one thing you can count on is never knowing how you're going to be tomorrow!

Hang in there! You're not alone!

Cheers!
Sandie
deleted_user
deleted_user
Mestinon is somewhat of a hit or miss like Sandie said. My neuro told me eventually I'd have to figure out how often I need to take Mestinon based on how I'm feeling that day. I definitely know how you're feeling, our days are so unpredictable.
catnap2
catnap2
No doubt what everyone has said is true. My surgeon told me with the fluctuating symptoms that the mestinon was not controlling my mg. At that point you have to decide what the next step is. There's IVIG, plasmapheresis, steroids or immune modifying drugs, or thymectomy. Have you had a scan of your thymus? An abnormality there could be more diagnostic. You and I are on a similar course. Your symptoms sound very much like mine and I was diagnosed around the same time. I have just completed 5 rounds of plasmapheresis and am almost symptom free! Next Thursday I will be having a thymectomy with the hope that it will do away with all this monkey business.
Cathi
kaicee118
kaicee118
Thanks very much, everyone. I am so happy to have found this board - I've been looking for a good MG board for a while.

I had taken Mestinon before, during the time I had Graves Disease. At that time, I think I (and my docs) were confusing GD and MG symptoms. So I was quick to dismiss Mestinon ("as soon as my thyroid comes out, I'll be a lot better," was my thought). Well, my thyroid is out, and my eyes actually got worse. Plus, I have ptosis instead of the bulging eyes of Graves'.

So now I'm back on Mestinon again. I am more open to it this time, and more attuned to my symptoms. I have yet to have a positive MG test of any kind, which is why I want to watch the effects of the Mestinon carefully.

Thanks for the info, I will probably have a lot more questions:-)

Karen