Hi all. For a few years before my diagnosis with APS, I was having symptoms of one of my eyelids feeling droopy off and on. I mentioned it to my then neurologist. He chalked it off to opthalmic migraines. I kept mentioning it every time I went to see him. It didn't seem to matter to him. Just before I was diagnosed with APS, I had a strange event of body spasms starting in that same eye. And, my eyes blinked uncontrollably. I ended up in the ER thinking it was a seizure. That same dr. (even though he didn't come to the hospital to see me) told the on call ER doctor it was a panic attack. Anyway, from then on, I continued to have these types of symptoms, mainly with eye blinking. The eye blinking became worse and I began to have severe facial spasms and strong muscle contractions to the point of severe pain. Two years after that severe episode and almost 4 years after the eye drooping began, after several appointments with many types of neurologists, normal EEGs, too many CT scans to rule out TIAs, psychiatrists, and psychologists, I finally went to a neuro-opthalmologist. I brought to my appointment a video of one of the episodes. He knew immediately what it is. I have Meige Syndrome - a type of dystonia or movement disorder. He does not believe it is due to the APS, but because the severe episode coincided with the APS diagnosis, I think there is a connection. I did some research on Meige Syndrome and there is information about basal ganglia antibodies. The basal ganglia is at the base of your brain and is your brain's information center. I am going to ask my hematologist about it to see if a blood test can be done to find out if these antibodies are high. I haven't gotten very far in my research of this, but may find there is a connection. Although I am relieved that there is finally a diagnosis, and I no longer have to fear that I am having TIAs or strokes, I never in my wildest dreams thought I would have these strange medical conditions. What I get from all this, you know your body better than anyone, and you must continue to search for an answer. Don't take one doctor's opinion as they do not have all the answers. I am now searching for a specialist in movement disorders to make sure this condition is treated properly and it does not affect my entire body.
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