I went to Augusta, GA last week and met with the neurologist, Dr. Rivner, at the Augusta University Medical Center. He examined me and did an initial screening. I was approved for the study and sent for lab tests. I will have to come back within a few weeks to be administered the drug. Too bad they couldn’t have done everything in one visit.
There are two cons to the new drug. It doesn’t replace monthly infusions and it isn’t a cure for the disease. I am praying in faith that I can at least reduce the frequency of infusions in the future. Once I am administered the drug, I will take it for a full month, then head to Miami for the study.
The drug is called Amifampridine Phosphate, used to prevent weakness in LEMS patients. From my understanding, there will be an experimental and a control group in the Miami study. One group will be administered the actual drug, while the other group will be given a placebo. No one will know which one they will be given in the study.
Please continue to send your prayers. This is the closest thing to a miracle I’ve found in over six years. Hopefully, it will make me feel stronger and have more endurance. I give much thanks to my sister, Susan, and her husband, Donny, for taking me and giving me transportation to and from Augusta.