(January, 1999)

Aggressive Self-Diagnosis
from Dave W.

Mr. Dewke: Having been reading through the archives, I got to feeling guilty about reading everyone else's stories, so I just thought I'd share my own.

In retrospect, I'm sure my psoriasis (even though it's much easier to just type P, whenever I read "my P has been flaring up," I can't help but think that someone should be going to a urologist) began in my mid-twenties. I've had dandruff since my early teens, but I recall finding big clumps of itchy "dandruff" when I was about 24. I didn't think much of it, except perhaps that I should switch to a different dandruff shampoo.

One night in 1994, I suddenly realized that I had been scratching my elbow quite often and savagely for the previous hour or two. As often occurs with me, and others I'm sure, I don't often think about scratching an itch until the scratching has gone on for so long it turns from itch to pain. When I looked at my elbow, I found a pencil-eraser-sized red spot. Since insect bites tend to grow into large bumps on me, I knew it wasn't that. To get relief from the itching, a little (over-the-counter) hydrocortisone cream did the trick.

Well, the spot grew into an ugly-looking scabby thing, but since the hydrocortisone was keeping the itching from making me nuts, and also seemed to help soften the thick stuff up so it was easy to peel off, *and* I had a nice, unhealthy aversion to doctors, I lived with it.

Now, I'm a T-shirt kind of guy. As the spot on my left elbow grew, and a spot slowly developed on the right elbow, I wound up finding ways to avoid answering questions at work and from friends about that "stuff on my elbows." It's very awkward when a friend's three-year-old son points at your elbow and says, "You've got a boo-boo!!!" For the sake of business, if VIP customers were coming to a meeting at work, I'd wear long sleeves.

So, in 1996, I think, I was flipping channels at about two in the morning. I wound up flipping to some talk show, perhaps Sally Jesse, and was about to go on to the next channel when on stage I saw this girl of seven, with these patches all over her legs and arms. It looked just like my elbows (and what I imagined my scalp to be like, which was getting worse at this point). Needless to say, I did not go on to the next channel. They spoke of banana peels and the Dead Sea, and the show bought the girl her own UV table. "PSORIASIS" I wrote on a slip of memo paper.

I called my primary care physician the next day and made an appointment. Then, I hopped onto the Web. I found the National Psoriasis Foundation easily. The links there brought me here to Flake HQ and a boatload of other sites. I printed everything out, and assembled it into a huge three-ring binder by subject matter (I would have been REALLY annoyed had it NOT been psoriasis after all the work I put into that binder).

A week later, I went to my appointment. The doctor asked what was wrong. I pointed my elbows at him, and said "I think this is psoriasis." He said, "sure looks like it," and began making notes in my records, referring me to a dermatologist, and giving me a prescription for a mild corticosteroid. At one point, I showed him my binder. He told me that I probably knew more about psoriasis than he did.

I took the binder with me to the dermatologist. I pointed my elbows at him, too, and he said, "Yup. That's psoriasis." As he began writing stuff down, I told him about the binder. After he finished writing, he asked to see it. The binder's got a section in it on treatments, which he flipped to, found a drug chart I dug up from somewhere on the 'net, and began circling stuff. "I'm giving you this (circle), this (circle) and this (circle) for your elbows, and this (another circle) for your scalp." Once I got the 'scripts to the pharmacy, my "goop" was born (coal tar, salicylic acid, and Ultravate).

I "gooped" religiously for a while, and the scabbing, flaking and itching went down quite a bit. Except for my scalp. The Diprolene didn't seem to do much of anything. But, I've got a lot of hair, and the itching is tolerable, so the Diprolene goes unused. My use of the goop, however, goes in cycles. It works fine, slowly reducing the size of my plaques. However, as I typically have my elbows planted on the arms of my chair or my desk when I work, the goop can make minor messes. That, and irritation at getting out of the shower, gooping, and washing my hands *again*, have led me to "forget" to goop for up to months at a time. Every time I start again, I pledge new allegiance to my goop and the good it does me.

Well, since I began gooping, I've developed a large plaque on the outer side of my left shin, where, due to wearing socks and boots, I'm pretty sure the goop isn't doing much good. Just a couple of weeks ago, I noticed a teensy spot on my right leg in exactly the same spot. Reading in the archives about Nats Effect is one of the reasons for my writing. And I've also got patches right in the crease between the backs of my ears and my scalp. Those are very painful, as the delicate skin there seems to crack open pretty easily (but I forget that until it's too late, and I've already scratched).

All in all, from reading the archives here and elsewhere, I've obviously got it extremely easy. In my own estimate, I've got less than two-percent coverage. I feel greatly for all of you with much more severe cases, especially as I know that at any time I could probably break out into one gigantic scab. And, being a computer programmer, anytime I feel anything weird in my knuckles, I get tremendously worried about arthritis. These keyboards have been very good to me for the past twenty years, I'd hate for anything to interfere with that. I asked a bone specialist (what's the word? ortho-something?) about psoriatic arthritis once, and he kept dismissing my questions because "it's very rare." I kept telling him that it's not so rare when you've already got psoriasis, but he wouldn't listen. My best guess is that he knew nothing, but didn't want to admit it. (An amusing aside: Netscape's spell check tries to "correct" the word "psoriatic" to "prosaic.")

Since diagnosis, of course, I've had the answers to questions from friends and coworkers. I remember after getting back to work after the dermatologist appointment shouting "Hey guys! I found out what this crap on my elbows is!!" I've educated anyone who cares to listen on the, uh, "wonders" of psoriasis (using examples I've read on the Web to point out that my case is very mild). My wife isn't bothered by it at all, except to remind me to goop up when it's obvious from the big white scabs that I've forgotten again. I'm still a T-shirt kind of guy, and don't mind odd looks at my elbows. In fact, I find that I now look at other people's elbows more often. And even before I got the big spot on my leg, I never liked wearing shorts, so that's not a problem.

The funniest part of psoriasis so far has been this: I found an old friend of mine via email not too long ago. He and I were catching up on one another's lives, and I mentioned having psoriasis. He wrote back, "Well, you've always liked beer a lot. Have you quit drinking?" Several confused emails later, it turns out that he thought I was referring to cirrhosis of the liver.

It was after finding the new spot on my right leg that I got back on the Web, to check for new developments at the NPF, and to see what's been happening here at Flake HQ. It's good to know you're still around.

From now on, I'll try to check back more often than once every 18 to 24 months. - Dave W.

*****

Ed's Response: Well, Dave, I'm especially glad you decided to check back in and share your story. If all of us had been as aggressive as you were in compiling our own notebooks, lots of money spent on misdiagnoses and lots of anguish would have been avoided. It's really unfortunate that most folks who will read your story here have already been where your lesson would have done them the most good! (Oh well, that's one of the reasons why the title of my site, FLAKE HQ, might do some good: This site tends to pop up in search results for people who want information about breakfast cereals ... some of them must be unknowing psoriatics! IF ONE OF YOU IS READING THIS, FORGET CORN FLAKES LONG ENOUGH TO REREAD DAVE'S LETTER!)

Your experience with the orthopedist (that's the word, by the way) is frustrating to read about. Don't put up with such ignorance. Move on. Your derm can probably recommend an orthopedist to whom he has referred other PA sufferers. I'm like you, Dave, in that PA in the hands would be extremely debilitating. (We both make our living at the keyboard.) Knowing that PA is, for the moment, as incurable as P, I can only pray that voice-activated computer interfaces will be perfected before my fingers wear out.

I hope you do check back more frequently than every 18 to 24 months. How will you feel if you are the last one to learn about THE CURE? -Ed

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