Mail (November, 1998)

Misdiagnosed with Cancer!
from Todd F.

I recently discovered your page while surfing for information about psoriasis. Your page has provided me with a great deal of insight about what my future may hold. Last week my derm confirmed that I do have psoriasis. Although he first told me that he believed I had Mycosis Fungoids. After several biopsies he diagnosed me with psoriasis. Of course he scared the hell out of me with the mycosis fungoids.

I am 31 years old. I suspect that I have had P for the past three years with the severity increasing with time.

In the winter of 1997 I was treated by a different derm who had me try eight to nine different topicals. But he never told me, "I think you might have Psoriasis." Because I never got much relief from his topicals I quit going to him. My thoughts at the time were, it's just something I have to live with.

Thankfully, this June my wife convinced me that I needed to seek help. I am not sure if she was tired of my suffering or if she was tired of the layer of flakes that covered her house. Because of my past experience with topicals my derm decided to treat me with UV light. In five weeks I was almost 100% clear. Of course I was driving 90 miles round trip to his office three times a week to achieve this miracle. But it was worth it. I felt great and I looked great. My derm suggested that I stop the treatments and see what would happen. Well you know what happened. But thankfully I have resumed the treatments and with one or two trips to the "light box" a week, I have remained 95% clear.

Now that I have read the archives of your page I realize that UV may not always work. However, I am now in the process of attempting to get a "light box" at home. If my insurance company approves.

I have yet to mention my other disease. Four years ago I was diagnosed with chronic neutropenia. Without getting into details it means that I have chronic cycles of low white cell counts. Of course that means that I am more susceptible to infections. Thankfully I am able to maintain my white cell count with a drug called neupogen which I inject into my body every third day.

I am certain that my P is caused or related to my neutropenia but I have not been able to get my derm to confirm it. Nor have I been able to get my oncologist, who treats my neutropenia, to offer a definitive opinion. I would be interested to know if any other P sufferers have similar conditions. Also I am interested if anyone else has had a scare with mycosis fungoids. Thank you for this page. -Todd F.

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Ed's Response: Welcome aboard, Todd. Like so many other flakers, you had to experience the gauntlet of misdiagnosis before "graduating" into the rank-in-file of the "confirmed." Spurned by your experience, I did a little on-line research about mycosis fungoids. The most informative page I found is hyperlinked at the bottom. Reading the list of "phases" for this form of cancer, it's no wonder docs can confuse some manifestations of psoriasis for mycosis fungoids. The only good thing about such a misdiagnosis must be the relief one experiences if P is ever identified as the actual culprit! If you had to be misdiagnosed, better your way than the reverse. I'd hate to spend precious time with a derm who thought he was treating P when in fact I had a cancer.

Ultra Violet light (UV) in its assorted solo and combo regimens is what I call a palliative. It palliates symptoms rather than cures the disease. At the moment, palliatives are all we've got. The good news is that a large percentage of psoriatics respond well to some UV regimen. The bad news is they often don't respond well FOREVER. This fact, as I've written before, dissuaded me from buying a lamp for home use. (A decision later reaffirmed when it was discovered I could not tolerate sufficient exposure to make the regimen worthwhile.) But my decision not to invest because of the typically temporary benefit should not be taken as advice. The OTHER good news about most palliatives is they often stop working ONLY TEMPORARILY. When the affects of a palliative treatment start to dwindle, many psoriatics find they can stop for awhile and then return for continuing positive results. Which means your lamp might spend some time in the closet or attic, but not lose effectiveness forever.

Other ailments are known to trigger psoriasis. For those of us with a genetic psoriasis proclivity, it is as though the health of our skin is always teetering on the edge of a cliff. The slightest breeze could push us over. So I'm not surprised that you also suffer from chronic neutropenia. Nor am I surprised the docs are reluctant to confirm any association between the two diseases. Correlative statistics about potential psoriasis associations are "statistically insignificant" in most cases. This is probably because the research has not been too robust (or sufficiently robust) or the definition of the disease itself is too broad. Sometimes we can't see the forest for the trees. When psoriasis is finally understood, we may come to find it is right up there with "runny noses" as a useless nomenclature. Many of us suffer from runny noses, but there are ... what? ... a few hundred possible causes?

So, it's up to us to discover the associations. To that end, I'll iterate your questions: Let us hear from readers who have had (a) similar misdiagnoses, and (b) neutropenia or other blood disorders. Thanks, Todd. -Ed

Good description of Mycosis fungoides/cutaneous T-cell lymphoma (MF/CTCL)

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