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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limpnoodle 01/19/2013

I hadn't read anything on this subject, so I didn't know if was an mg thing or not, but over the past few weeks I have had more and more pain behind my eyes, especially when trying to focus on something close. I have to look away or close my eyes and then the pain subsides. They have really gotten bad since I started on the steroids. It was bothering me to look at TV or the computer or anything.
I am thinking now that it is an mg thing because after my first Ivig treatment today my eyes are feeling better. Not totally 100%, but I can look at something close and they don't hurt!
They still have a little mild pain when I move my eyes around, but nothing like earlier today.

annkemp 01/19/2013

sorry to hear about your discomfort and pain.
Nothing would surprise me with this disease. I had issues with light...do sun glasses help? You might want to get it checked out.Those steroids can do crazy things and pain is a warning.
Ann

limpnoodle 01/19/2013

I just started the steroids in the hospital. And yes my eyes are very light sensitive. I have an appointment with an eye doctor, but couldn't get one till next month.

deleted_user 01/19/2013

Before I was diagnosed with MG I was having trouble with my eyes. I was unable to focus in on things It made my eyes hurt and they were unable to hold the focus. It is hard to describe, but what you said sounded similar. Since I have started my treatments I haven't had any problems. I think it is part of the disease.

limpnoodle 01/19/2013

Km20, are you taking Ivig treatments?
I was trying to do the respiratory measurement thing that they put at your bedside, and I couldn't figure a way to use it with my eyes shut, because it hurts a lot to focus on things that close. But tonight I can look at it with no pain.

deleted_user 01/20/2013

Yes I am taking IVIG treatments along with 60mg of Mestinon 3 x's a day and Imuran 50 mg 3 x's a day. While in the hospital I received plasmapheresis treatments too.

momsotired 01/20/2013

I hope the discomfort and pain get better. I am not sure about the dose of steroids you are/were on and for how long - but be sure to get an opthamologist on board. With steroid use can come cataracts or glaucoma. If available, a neurophthamologist is a great first stop becuase they are in tuned to MG and other eye problems!
Good luck, Nicole

karla1988 01/23/2013

I have a lot of pain in my one eye that has ptsosis. By the end of the day I just wantbo shut it completely. Praying for you!

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