Second Thoughts on Dr. #1 at Florida Hospital

One week after David and I met with Dr. #1 at Florida Hospital, I am starting to think he's not that great after all. Here's why, the doubts and questions he had regarding Histiocytosis have been swirling around in my head and I have looked up some articles on line which I have shared with David who I think I can say, feels the same way I do right now. Each time I do this, I get frustrated because "ITS ALL THERE!" If this doctor had just spent 30 minutes reading Dr. McClain's Articles, the Histio.org site or just googled LCH-CNS, he would see that I am a "Classic Case". If he really looked up LCH-CNS, and read my history, he would know my symptoms and MRI are grossly in line with other Case Studies of LCH-CNS. He would also know that this is "Eventually progressive neurological degeneration that renders the patients wheelchair bound and severely disabled and may lead to a fatal deterioration in the worst cases." as stated on the Histio.org website for my Type VI lesions.

I checked out MD Anderson today when I offered to personally drop off my MRI CDs. This center definitely makes a good first impression. Clean, pretty, VERY NICE people to greet you and a Cello playing in the lobby. I could be happy there for a year. All it will take for Dr. #2 at MD Anderson to win me over is a little more enthusiasm with a case that is different from his usual suspects. This will be obvious if he reveals that he has done his homework prior to my arrival. (He had to review my case and accept me before I was able to set an appointment, so he has had plenty of time to do a little homework.) My appointment is Wednesday, July 14th.

I think I am just starting to get anxious because my dizziness and balance has gotten worse. I find myself wanting to stay in one place and not move around. This goes against my nature as most of you know. I like to be active and social...but I don't feel right, so it makes it hard to be myself. Today, as I tried to put coins in the parking meter, I kept dropping them. I couldn't get them in the slot. At home, I had trouble getting my dog's pill out of the container and into a hot dog. I have also had some trouble with slurred speech the past couple of days. I am hoping some of this is elevated by my sinuses acting up but deep down, I fear it is mostly this stupid disease progressing.