Update (seronegative, regular SFEMG, suspected thymoma!)
Hi again. I posted a month or so ago about how all my antibody tests were normal. My SFEMG was also normal. My neuro at that point said it looked like I didn't have MG and was going to order an MRI to rule out other things. I asked for a CT scan and sent him pics of my eye with the ice pack test. He saw the pics and said, "Well, that appears to be MG." And ordered a CT scan.
Mind you, he's got years of experience with MG and came highly recommended. Anyway. Just had my CT scan done yesterday and he called me less than 3 hours after the test, saying they found a nodule on my scan and it was inconclusive, but they needed to do another scan. However, from the sound of it, it sounds like a thymoma (It said: There is soft tissue nodularity involving the anterior mediastinum which may be greater than what would be expected for residual normal thymus in this patient demographic for example at the thoracic inlet extending anterior to the right brachial cephalic artery measuring 1.1 x 0.9 cm (7-71). More caudally nodular soft tissue involving the thymus with a subtle area of central low attenuation measures approximately 2.1 x 2.2 cm.)
But is a thymoma usually in multiple nodules? At this point I'm waiting for a follow up CT scan, more testing, etc. But I'm just so glad I pushed to have it done!! And trying not to freak out 😄