Biography

I was 62 going on 40 when my symptoms started.  Since I was extremely active, I noticed small changes very quickly. I started going with my primary physician and proceeded to see every type of doctor, all tests were normal, even the emg. Finally, it was my ophthalmologist that noticed something wrong. He said something myasthenic is going on with me. I immediately went home and googled the word” myasthenic”. And there it was, my symptoms all lined up with LEMS. I called my primary and requested the vgcc test. And after about 100 negative blood tests, that one came back positive. I was fortunate to be diagnosed so quickly. I was put on firdapse, then about a year later I started ivig and I have just finished my 2nd Rituxan infusion. I read about others with lems and some could still take a walk or ride a bike …. I have a more severe case. I’m on max dose firdapse and doing these infusions but I can barely walk a block. I feel the rituxan is starting to help and hoping for continued improvement.