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Two Years to a Proper Diagnosis
from Marion D.

Hi Ed, I don't even know where to start.  I was diagnosed with P about 10 years ago and have been on a rollercoaster ride since then. 

First of all it took me approximately 2 years to receive an accurate diagnosis.  My family doctor finally referred me to a derm when he couldn't figure it out.  The first derm I saw was an idiot!  After numerous prescriptions (for who knows what) he did a biopsy.  When it came back he said I had a disorder common to Black people which had something to do with the skin pigments. I just looked at him like he was crazy.  I'm no doctor but I'm am not stupid either.  To make a long story short, I saw another derm who took one look at me and told me what I had.  From there it's been a whirlwind. 

I've used Dovonex, Ultravate, light therapy and now  (with a new derm)  I use Dermazinc with clobetasol.  This is working fairly well, but I am never plaque-free.  Probably will never be!  But I have learned to live with this and try very hard to stay upbeat. 

I was ecstatic to find your site because I felt soooo alone for a long time.   Never realized how many people suffer with this disease.  Since I've started researching I have learned many things I wasn't aware of and it is helping me to make informed decisions.

Thank you so much for being there and keep up the excellent work!  You are a Godsend. :0)  -Marion D.


Ed’s Response: I wish I could say stories like yours — being unable to obtain an accurate diagnosis in short order — are rare, but they don’t seem to be.  Those of us who have been properly diagnosed for some time often don’t take note of how puzzled new docs may at first be.  Over the past twelve years I’ve seen more doctors than I can remember, and I’ve heard “What have we here?” or “What’s this?” a lot.  Now I just tell them.  I tell them what I’m currently doing about it.   They “hmmmm” and “ohhhhh” and write something down.  I don’t ask myself, What would they say if I said I didn’t know what this is?   How many of them would respond, It looks like psoriasis?  I imagine fewer than I would like.

I wonder what the disorder was that one doctor diagnosed from your biopsy result? 

While I’ve read that the incidence of psoriasis among Caucasians is much higher than for people with darker skin, the condition is species-wide.  Nobody escapes the possibility.

I’m glad, Marion, that you’re finding valuable information and learning to make informed decisions because that’s really the only way we can pursue relief for our P.  Because we can’t pinpoint exact causes — yet — and because virtually every medicine currently available is less than 100% effective (i.e., there is no cure) — living with our P is a matter of trial and error and it takes years of living with the disease to become effective at managing P.  Docs and derms can’t take enough notes to be well-informed in the long run. 

My long-term derm has two manila file folders on me, both over an inch thick.  We refer to them as “volume one” and “volume two.”  I am constantly having to remind him what’s in them.  We tried that back in volume one, I’ll say.  “And how did it turn out?” he’ll ask.  Not well, I’ll say.  “Okay then.  We won’t try it again.”  And so it goes.

I hope you belong to the National Psoriasis Foundation and get their periodicals regularly.  Finding and joining them in the early 90s is what set me on the right course.  One of their mottos at the time was “Take charge.”  It’s made a lot of difference in my case.  -Ed

National Psoriasis Foundation

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