Originally Posted by art chick

I'm the seronegative, 2 crisis in May and June, 15 days in the hospital, all tests negative and normal until now. . . my MRI with contrast of my chest just came back and it shows a mass of tissue in the thymus that they cannot discern yet. I have a CT w/o contrast scheduled for next week now.

My MG expert neuro is so awesome to have ordered this test. The previous place used a CTA(angiogram) to say I had no thymoma and dismiss any abnormality of the thymus. I would be at square one right now if he he hadn't insisted that that test was insufficient to visualize the thymus properly. Make sure you are having the correct test people. . .

It looks like I may have my "objective marker" for MG afterall and FINALLY. I will not have to get the muscle biopsy now.

If you were following earlier notes, the breathing tests did show a mild abnormal lung function pre-mestinon and a return to normal function after mestinon by a 20% margin.

The doc says I need surgery and it looks like soon. I have IVIG scheduled again in another week and a reassess of strength to reduce pred in preparation. He prefers transsternal to get all the adjacent fat and not to have to repeat surgery down the line if they missed something. . .

What a crazy turnaround!! debra