Thursday, March 15, 2007

March 18, 2006 at 01:00 AM EST

Hi! I decided to start this care page for my friends and loved ones to be able to check and see what is going on with my journey with "probable ALS". ALS (amyotrophic lateral sclerosis) A chronic, progressive disease marked by gradual degeneration of the nerve cells in the central nervous system that control voluntary muscle movement. The disorder causes muscle weakness and atrophy; symptoms commonly appear in middle to late adulthood, with death in two to five years. The cause is unknown, and there is no known cure. Also called Lou Gehrig's Disease, or Motor Neuron Disease. Literally, amyotrophic lateral sclerosis means without muscle nourishment, side (of spinal cord) hardening. My first symptom was intermittent slurred speech. This began in October 2004. I first saught medical treatment for this in February 2005 with Robert Alonso, MD at Methodist Hospital in Indy. He felt that my symptoms were in line with those commonly seen with Myasthenia gravis. I had titers for the knon causes of MG (AcH antibody, MuSK antibody), thyroid studies, heavy metal studies, an MRI, and EMG and an RNS. Everything was normal. He suggested I wait unitl February 2006 and repeat the MRI. Instead I sought out a second opinion from Robert Pascuzzi, MD at IU (since he is an expert in MG and ALS). On my first visit to Dr. Pascuzzi he said that I did not have Myasthenia Gravis (he is an expert on MG) but, rather, have Motor Neuron Disease, or more specifically Amyotrophic Lateral Sclerosis (ALS)/Lou Gehrig's Disease. I was in SHOCK as he went on to tell me that most people with ALS only live 2-5 years after diagnosis, with only 10% living 10 years or more. Since that time I've had more tests and seen Dr. Pascuzzi twice. He still is sticking by the "probable" ALS diagnosis. He prescribed the only medication used to treat ALS, Rilutek, but I have opted to wait to start taking it for fear that taking it will cement a still slightly uncertain diagnosis in my medical records. More to come....

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