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Years to a Proper Diagnosis
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.
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.
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
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.
what the disorder was that one doctor diagnosed from your biopsy result?
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.
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
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