Help! Ptosis & Vision Problems With MG
I was diagnosed with MG in 2024. At first, I was losing muscle and dexterity mostly in my left arm and hand. Then Ptosis crept in. As everything progressively got worse, my Primary Doctor predicted I had MG, so I asked my Neurologist and he waved it off like it was nothing. So then I made an appointment with a neuro-ophthalmologist and he set up a visit to get an EMG test which proved positive.
Treatment and Unpredictable Fluctuation
He then first prescribed pyridostigmine 3 times a day, which helped with the limbs and hands, but did nothing for my Ptosis. So he then prescribed Apraclonidine eye drops, which barely helps, like 5% if that. It almost feels like he's milking my visits; it takes 3 months a visit, and I am getting worse.
But to his credit, my case is extremely unpredictable. My eyes can be as good as 80% when the brain is properly stimulated (doctor's office, most well-lit facilities, outdoors except for direct sunlight) but be at 20% or less inside my home or in a car. I am unsure if it is the environment, or simply the right mood that affects it. My brain is screwing with me.
Plea for Advice
I wish I could get a straight answer, I already have my hands full with my PD now I am practically blind most of the time. I use a Ptosis crutch and/or muscle tape to stretch my forehead which helps but hurts after a couple of hours. Is there anybody that could properly give me some helpful advice?
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