I was diagnosed with Myasthenia Gravis in March of 2017 at 27 years old. My symptoms started out mainly with double vision. I worked third shift in a medical lab at the time and thought it was because I wasn’t sleeping well. The symptoms progressed to arm and neck weakness (I couldn’t hold my arms up for long periods of time and dropped LOTS of things), quickly followed by choking on liquids and facial weakness. I was extremely fatigued! Eventually, an eye doctor ordered more testing and I was diagnosed by an AChR antibody blood test. I followed up with a neurologist and began treatment almost five months after I began seeking help.

I currently take Mestinon, Prednisone, Imuran, IVIG, and Soliris to treat my MG. I had a thymectomy in October of 2017 to remove my thymus in the hopes to reduce symptoms in the future. I have not seen any significant improvement since the thymectomy but the neurologist and I are still hopeful. In December of 2017, I had surgery again to place a port-a-cath in order to be able to receive my infusions several times a month due to my veins collapsing during treatments. Since beginning my Soliris treatment, I have been able to lower prednisone and am more stable than I have been since diagnosis.

I’m lucky to have supportive family and friends. My friends are aware of my MG and do not take it personally when I have to cancel plans or I spend their visit laying on the couch. My family knows what I need and help without being asked. We make adjustments as needed so I can participate in life.

I don’t know if I will ever “come to grips” with MG. I personally despise the term “new normal”. One day I can hike six miles up a mountain and the next I need a nap after showering; I never know how I will feel and that’s one of the worst parts of MG. I grieve the life I had before this horrible disease but have hope for a cure in the future. I try to take advantage of my good days and make peace with the bad ones.