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Hey All, thanks for being patient with me as I journey through this change the past couple of months. As a brief reminder, my drs didn’t agree 100% with my diagnosis.
I could not move my left eye for approx 2 months. Major double vision and droopy eye. Just after Christmas I started Prednisone. My double vision started to get better and now is pretty much gone and I have my eye movement back
Here is my question. Last week I started getting major pain on the right side of my eye and it’s… read more
I have been to Neuro-optometrist and Neuro-Opthamologists. They have more tools to evaluate your eyes.
Just like for general MG, you could have other eye illnesses too
And these specialists might be able to put a prism in your eye glassses to give clarity and relief.
I know for me, my vision is a moving target. So a prescription on a given day might not be as Clear/ perfect another day.
I know for me, getting on ultomiris normalized me more, helping my gMG and OMG and all my daily living activities.
I found an article that might be helpful: https://pmc.ncbi.nlm.nih.gov/articles/PMC4278125/
Ocular myasthenia gravis (OMG) can mimic isolated cranial nerve palsies, gaze palsies, internuclear ophthalmoplegia, blepharospasm, and even a stroke.
Somewhere else I read ocular MG doesn’t cause eye nerve pain.
But the above on cranial nerve palsies- I have had that so a second opinion related to what you are experiencing could be helpful. At one point I had multiple eye doctors trying to figure things out.
Keep us posted on your progress on this?
I cannot tolerate Predisone at all. My doctor has me on Cellcept for immuno-supression.
It sounds like you're navigating a challenging time with ocular MG, but it's great to hear your double vision and eye movement have improved with prednisone. Regarding the pain, while nerve pain isn't a typical symptom of ocular MG, it could be related to other factors, such as medication side effects or strain from Show Full Answer
Thank you so much! I appreciate it!
You are spot on. They checked me for stroke and MS (originally diagnosed me with Internuclear Ophthalmolgia until my bloodwork came back positive for the blocking antibodies of MG.
At that point the Ophthalmologist said I 100% had MG and the neurologist still wanted to rule out a palsy. During my last appointment he said my eye started to droop and we should start Metisnon and Prednisone.
They think it’s nerve pain caused by the cranial nerve damage, but Dr said the same thing. Should not have eye pain with MG.
Anyway, and now here we are! Thanks again for taking your time to respond! I sure appreciate it!
Over the past year, I have experienced eye pain on the right side of my right eye several times. This pain tends to occur just before I notice a change in my vision. I prefer to avoid using prednisone if possible; my previous experience with it back in 1998 for a separate autoimmune illness was quite unpleasant due to the side effects. I have taken pyridostigmine but have seen minimal results. However, I have had excellent outcomes with IVIG treatments.
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