Biography

I am now 69 years and was diagnosed with LEMS after being misdiagnosed for 3 years after having lower back surgery for leg weakness thinking there was a pinched nerve. It continued to progressively got worse and was admitted into the hospital to run tests. After lad work and EMG the head neurologist at Swedish Hospital and a feeling he knew what was going on. He sent the lab work to the Mayo Clinic and found out it was Lambert Eaton. One of the drugs he prescribed was DAP 3,4 which was formulated at a local pharmacy for 20 mg 3 per day for $140. After 6 years my Neurologist told me of a clinical program Anschutz C U medical for the DRUG study of DAP 3,4 which I was on until Jan. 1st 2019 and was switched abruptly to Firdapse which was a little scary when I was told the cost was $3200 per month before insurance. Insurance initially denied this drug but with the help of Tafcares but it doesn’t work as well and I want to get back on Ruzurgi if there was a way.