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I am in the same boat. I have seen several different doctors over the past two years. This includes at least 6 different neurologists, no have been able to provide a diagnosis.
In November, I was seen by two different neuro-ophthalmologist, one at the hospital and one at their office. They both said my symptoms and my evaluation was consistent with Ocular MG. They prescribed mestinon 30mg, 3x per day. I was then to taper up to 60mg. After 4 doses, I had relief from my double vision. I previously had double vision for the past 10 months, except when laying down or tilting my head up or to the side.
I saw a neuromuscular neurologists yesterday who specializes in MG. She does not beleive I have Ocular MG. She performed my EMG in January and it was unremarkable. MG antibodies have been check twice and each teat was negative. She was able to prescribe me prednisone, so I am hoping that it helps my symptoms. She also scheduled an SFEMG, but I am concerned this will be negative if the prednisone helps.
I am so frustrated that the neurologists will not listen to the neuro-ophthalmologist. However, I am glad they prescribed prednisone. I will still go through the test recommended by the Neuromuscular neurologist, but if she can’t figure it out, i will make her discuss it with the neuro-ophthalmologist.