The week of March 19th I made a call to find out if the results were back. They should have been, but they weren't. So Mary, the coordinating nurse (another very nice member of the team up at the neurology clinic), had to chase down the lab to find out what was up. This went on for a week or so, but Mary told me that the results should be there on April X (can't remember the date). Right after that day I called in and Mary was busy so I asked for my little friend, Kenya. Kenya confirmed that the results were in and said she could share them with me. Kenya was very happy to tell me that the DNA test came back negative. No Kennedy's! Great news! Right?? Well . . . .actually no. That means that I was back to flunking tests for conditions other than ALS - kind of a bummer.
I emailed Dr. Smith asking for clarification and confirmation of the test results. He answered by email and explained that he was not satisfied with the test results and that he would speak with the lab and probably ask them to run the test a second time. There are two notable things about what I just wrote. 1) I have a very busy, nationally renowned neurologist who responds personally to email. I don't know about you, but I've never had a doctor that responsive, and on a first name basis, too! 2) Maybe I could have Kennedy's after all. New hope!
|Ian Blue Riley|
But we did wait, and eventually the second test came back - again, negative for Kennedy's. Mixed feelings? Not really. Dr. Smith said that he still wanted to talk this through. He said that even though the Kennedy's test was negative, it is a very big coincidence to have a neuromuscular disease and gynecomastia. Maybe there was still something to that. He was going to do some more research and we would discuss it at my next appointment.
My next appointment with Dr. Smith was going to be on May 8th.