Profile

Hi! I was diagnosed with MG when I was 46. It started with a droopy eyelid and double vision. The doctors at first thought I had a stroke. Then it happened again about 6months later and I was put through all the tests for MS, which were negative. I am also negative for all the known antibodies for MG, but was given the diagnosis of ocular MG anyway. I went on steroids and an immunes suppressant for about 3 months, but my hair started falling out so I stopped taking the meds. I did not have anymore symptoms for 6 years! Then when I received the second dose of the COVID vaccine, the double vision came back the day after the vaccine. Thankfully, it only lasted a couple of days and I didn’t need to take any meds. Then last year I got COVID and my double vision came back with a vengeance! I had a left cranial nerve palsy and couldn’t move my eye at all. I was put on heavy steroids for two weeks and finally the eye problem resolved. I am symptom free at the moment …. but I want to do whatever I can to prevent my ocular MG from progressing. My neurologist told me I am not a candidate for a thymectomy because I only have ocular MG and because my thyroid is normal. But I have read that everyone with MG should have their thymus removed. Has anyone had a thymectomy with purely ocular MG? Does anyone know a neurologist in Houston, Texas who would refer me to have the thymectomy?