Biography

39(F) Mother of four children, recently diagnosed with LEMS. I was originally diagnosed with Mysanthia Gravis. I have been bounced back and forth between doctors in my diagnoses and pretty much had to be an advocate for myself in this journey.

One of my first symptoms was slurred speech and swallowing.. I remember trying to swallow and then telling myself t do so and couldn’t automatically. I had some other issues that I believe were all attributed to LEMS such as, having jaw pain that was diagnosed as TMJ, hand hand weakness where I was told it was because I had bulging disc in my neck. I notice I choking on spit, liquid and food, feeling dizzy, feeling unbalance, leg issues, and extreme fatigue. I was always told that by my neuro or pcp doctor that these symptoms were either migraines or something else where they would refer me to another specialist as a new symptom popped up. I realized that I wasn’t getting better so I searched out a Rheumatologist who listened to me. He contacted my doctors and told them to send me for chest xrays where it was discovered I had a thymic hydroplasia. I was then diagnosed with MG. I continued to test negative for the antibody’s and when the SFEMG came back negative, my doctor said that I should just “check in” from time to time to get retested for antibodies. I decided to switch a fourth time to a new Neuro, one that specializes in MG. He listened to my story, told me some things sound like MG but some didn’t. He sent me to get retested and added additional test. I came back positive for the VGCC test and he diagnosed me with LEMS. I’m currently waiting on my PET SCAN and freaking out of course.