February 2009

The diagnostic process began at the beginning of February. I made an appointment with my GP, who sent me straight to a rheumatologist. Luckily, a cancellation resulted in me being able to go in the very next day, as I had been warned that an appointment could take weeks to get. I saw a local rhrumatologist who asked me to describe my symptoms in detail, performed a physical exam, and then drew blood for some initial tests. The very next day, he called back to ask me if I had been involved in some sort of severe physical trauma in the last 48 hours, such as a car accident, a bad fall, or a heart attack. He said that 2 enzymes that are indicative of muscle damage were very high, so much that they needed to draw blood again and rule out measurement error. He also advised me to drink alot of fluids to keep my kidneys flushed, as this level of enzyme could damage them. I re-submitted blood, and the enzyme levels were still extremely elevated. At this point, he seemed to assume an elevated level of alert with my case. He ordered a muscle biopsy immediately, which I had on February 12. Immediately after the biopsy, I was put on a 40mg/day dose of Prednisone. I continued to weaken, at this point extremely disabled. The strongest muscle group in my body seemed to be my legs. Although they too were weak, I could still rise and lower myself from sitting/standing positions, although with much difficulty. The ability to get onto my own feet and shuffle around was critical to my independence. As long as I could still get up, I could take myself to the bathroom, get to the kitchen, and other very basic functions. My upper body had become virtually useless. I had no arm strength, and my hands were very weak. They just hung off of my body like sticks. I did not have the dexterity or strength to unscrew the lid on my contacts, open a tube of chapstick, or floss my teeth. I could not rise from a lying position without assistance, my neck would not lift off of the pillow, my abs would not pull my body up, nor could I use my arms to push myself up.

I was on 40mg/day of Prednisone for about 2 weeks when the rheumatologist seemed suprised and concerned that I was not regaining any strength or functionality. At that point, he doubled the dose. Within a few days, I began to feel like I had just a little more strength come back to my legs. I had reached the bottom a few days earlier when I began to feel like my legs, which had been the last holdout of strength that I had, seemed to be getting weaker, to the point that I feared that I could no longer get up or down from a sitting position by myself anymore. The improvement in leg strength after a few days of the increased dosage was very hopeful, small though it was. I didn't notice improvements anywhere else, though. All muscles above the waist seemed as weak as ever, and I had noticed that my posture was feeling very compromised as well. When standing, I noticed that it seemed hard to draw in a good deep breath, as if my diaphragm couldn't properly inflate. I had also noticed that I was getting constipated, as if gravity couldn't work in its usual direction or the muscles couldn't push things through my system as effectively. My hands were very stiff and weak, and I performed manual tasks by simply pushing my hands around rather than trying to grip and grasp things.