March 20, 2008

I had a strange experience when I went back to my local neurologist on Monday. He proceeded to tell me that he had read all the information that Dr. Appel sent him from my trip to Houston, and that Dr. Appel agreed with him that they neither one know what in the world is wrong with me. It was definitely another Twilight Zone moment. I was mostly speechless while he talked on about this, but when I managed to say something about my diagnosis, he quipped, 'You don't have a diagnosis!' At this point I found it pointless to argue with someone who was so convinced so I was glad the visit was short. I walked out of there shaking my head and totally dumbfounded. I wondered who was right. Had Dr. Appel told me one thing and put something more vague in my file or had my neuro decided himself that there wasn't enough evidence for a diagnosis? So I spent the last few days thinking about this and I decided today to email Dr. Appel's wife, Joan, who is his PA. She quickly responded to my email and said that I was correct. Dr. Appel HAD diagnosed me with bulbar ALS and they would not have registered me with MDA and made an appointment with their MDA/ALS clinic if the diagnosis was still up in the air. She did say that it was a 'diagnosis with caution' because my symptoms are mild at this time, but she couldn't understand how my neuro came up with the things he told me. I have an appointment in May with the MDA/ALS Clinic in Houston, and then in late June in OKC. I am hoping that by going to Oklahoma City to clinic that I will avoid needing to see a neurologist here in Tulsa. Because if I need one here in town, I'm looking for a new one.