One could argue the long dance with MS prepares a person for ambiguity and frustration. True enough. What I am dealing with now, however, would get anybody lost on the long road to renewed health. That destination is hard enough to find under any circumstances. My new role as The Amazing Disintegrating Man has brought new mystery to medicine. Just ask my neurologist.
I was about to begin my second round if IVIG infusions. That would stand for, Intravenous immunoglobulin. IVIG is made of antibodies that have been filtered out of donated human blood pooled from many donors. You with me? Right. These five hour infusions save patients from physical problems by boring them to death.
Suddenly, I noticed my skin was becoming red, raw and ulcerated. The back of my neck had caught fire. I was covered with dead skin, leaving piles of it everywhere I went. And…and…the sores were moving around my body. Quickly, I decided something is not right, here. I went to a dermatologist in the next town, suggesting this was a reaction to IVIG. “Definitely not,” she said quickly, offering no other theories.
I went home and called my neurologist. “It’s probably the IVIG,” he said. “I’ve seen it before.” Okay. I went to see a different dermatologist, someone I had worked with in the past. She biopsied my thigh. “You are having an allergic reaction to a drug.
We still were getting nowhere fast. I was awakening morning s with bloody legs from scratching in my sleep. There were piles of hair in the bed every morning because my scalp was so dry, in addition to the scratching. My neurologist put me on methyl prednisone. It did not touch the problem. Then we went to regular, old oral prednisone, a drug I had barely survived in the past and had sworn never to use again. It did nothing.
By now my hands were red and swollen, my palms peeling away. My fingertips were split. It hurt just to look at them. I went to a major New York medical center. My five minutes with the big dermatologist was similar to the drive in window at MacDonald’s. I picked up my burger and fries and was assured this would just go away. “Be patient.” Patient? We were closing in on two months. That’s eight weeks, about fifty-six days. But who’s counting?
People are walking around me now. My family is denying they know me. I hurt and itch and have no faith my body will get back to as close to normal as it ever is. I want to keep my sense of humor. It must be with my wallet. I can’t find it. I will say this. I have made a decision I am announcing on this blog. I am joining the circus. The Amazing Disintegrating Man will be coming to a city near you soon.