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Feb 16 2007

The Onset of Symptoms

It’s possible to be asymptomatic with PSC for a very long time, and that was the case with me. I was initially diagnosed on September 8th, 2000, but it is very likely that I had the disease at least two years prior to that. For years I was symptom free and able to feel rather smug and complacent about my condition. I considered a transplant to be only a distant possibility. I took very good care of myself and didn’t do anything that might make my condition worse, but in general PSC was a background issue and little more than a footnote to my day-to-day life. 

That all started to change during the Christmas holidays in 2005. For two or three nights between Christmas and New Years, I was bothered by bouts of itching. At this stage, the itching was relatively minor but nonetheless troubling. I tentatively dismissed it as little more than dermatitis from wintertime dry skin. In the back of my mind, though, I knew that this itching felt somehow different. I also knew that itching is a classic symptom of PSC in many people (most eventually experience some combination of jaundice, fatigue, itching, abdominal swelling, and pain). What I didn’t know was that these bouts of itching were child’s play compared to what I would soon experience.In March of 2006, the hammer came down…hard.

During a meeting at work, the itching struck. I could barely sit still, and focusing was nearly impossible since my attention was consumed with my discomfort. I pulled a close friend aside immediately after the meeting and told him what was going on. He helped me get my head back on straight long enough to call my physician and describe my condition. I could tell by my doctor’s reaction that this was not good news, but he proposed some quick bloodwork to rule out any other possible causes for the itching. By the next day, he had enough evidence from the bloodwork (i.e., elevated liver enzymes) to suggest that I was having an acute issue, almost certainly related to the liver, but still of unknown origin. He proposed an MRI which I would have to wait 10 days for.

Now, it’s important to understand here that this is not your run-of-the-mill itching. This isn’t a bad bout of poison ivy. This isn’t dermatitis. This is mind-numbing, debilitating, painful itching. The medical term for it is pruritus. Pruritus can actually disable its victim, and make working difficult if not impossible. In many instances, those with pruritus injure themselves by scratching, to no avail, and will frequently develop wounds as a result of their creative efforts to find relief. At its worst, intractable itching has even been known to cause the occasional suicide. While I won’t be going there, I can certainly understand why this might drive someone to such extreme measures. This itching is alive, vibrant, electrified, and completely inescapable. When I’m experiencing it, I usually have a significant sense of claustrophobia because the itching seems to close in on you and doesn’t give you room to breathe, think or relax.

So, to say that my 10-day wait for the MRI was long is an understatement. I suffered mightily. I could usually get myself to sleep by loading up on Benadryl, which can take some of the edge off the itching and, in my case, knocks me out. But I was generally up again by within less than an hour and frequently could not go back to sleep. During this time I got anywhere from 45-90 minutes of sleep each night. QR29HZ8TK5Y6

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