Biography

After many miss-diagnosis of different neurological conditions, I was diagnosed with LEMS in 2016 at the Mayo Clinic. Upon returning home I started doing research about LEMS on my computer, and found a clinical study seeking LEMS patients, in order to get data to submit to the FDA to have a drug approved (at that time, it was only known as 3,4 DAP, but once it was approved by the FDA, it took on the name of “Firdapse”.)  I was told that it was a blind study, and I might be given the drug, or a placebo. I was being wheeled around in a wheelchair when I started with my 1st dose of Firdapse, and didn’t feel any difference at that time, so I was afraid that I was given the Placebo. Then, about an hour later, I started to get a mild tingling feeling on my face… Something was happening. I was still at the hospital where the study was taking place, and was given a physical test again. After only 1 hour, I was able to get out of the wheelchair, stand on my toes, and a few other physical tests that I couldn’t do before. I then realized that what I was given was not a placebo, but it took a little time (1 hour) from taking a dose until my body reacted to it. I continued in the control group of the clinical trial until the Firdapse was finally approved for treating LEMS, around a year ago. I continue to take 20mg of Firdapse, 4 times a day, along with other meds (pyridostigmine) which helps me cope with our condition.