by Paul M.
Dear Ed: I was just surfing the web looking for psoriasis information (PUVA treatment to be exact) when I came upon your site (from NPF). I thought that you might understand some of the following...pardon my bitterness, it still gets the best of me.
A few months ago (early Dec '96) I woke up one morning to find my body covered in leasions (over 90%). I have had very minor outbreaks before, but nothing like what I woke to; and I had never heard the word psoriasis before, I was always told I had exzema and given some cream. Needless to say I was scared, itchy and inconsolable. Because I just started a new job, I also had no insurance...which only worsened the whole thing.
I refused to go to work because the lesions on my face and hands could not be hidden or disguised. I called every dermatologist in the book only to be refused by each in turn because I did not have a primary care physician, a prior relationship with the doctor, or some other excuse. In desperation I went to the emergency room of the local hospital in search of some kind of help. Big mistake....
After taking a cursory look at different areas of my skin the PA told me that I had secondary syphilis and that in all likelihood a case of full blown AIDS (I think she determined this not from any kind of medical training but because my medical history listed me as homosexual). I was given a shot of penicillin in the ass, a hearty lecture, blood was taken for a test and I was told that I would need two follow up shots. That will be $150.00 please. Have a nice day.
I was also given a referral to a primary care physician for all of the follow up treatment, etc. I quickly made an appointment with him. He was the only redeeming thing to come from this experience. He was the only person to show any concern for how I was feeling and did everything he could to help me. I have kept him as my doctor. He was unfamiliar with my skin condition but made an appointment with a dermatologist for an accurate diagnosis and treatment. (He was able to make one call an get me an appoitment. I guess a referral has more clout than a suffering patient.) Oh, yeah, he had my test results also -- Negative for Syphillis.
He wrote me a script for some pills to take for the unending itching, and told me to have the HIV test.
So in between doctors, I sat home and fought just to remain sane, worried, cried, screamed and yes, scratched. I scratched until my skin bled. I also went and had my HIV test.
When I got to the dermatologist's office, he looked at my skin for all of three minutes, checked my chart and then told me that the only way in which I could have such a severe and sudden outbreak is if I was infected with AIDS. He was not sure what was causing the problem and took a skin biopsy from a lesion on my leg. He gave me some cream to help with the itching and to help reduce the plaques. Then he told me that he would not procede with any type of treatment until my HIV test results came back. Have a nice day.
So I went back home and went through all of that self-loathing crap again. Two days later I got my results. Negative for HIV. Results in hand, I went back to the dermatologist.
When I got to his office he performed no examination, he just sat me down and said "Yes, great, I got your test results, but you know that doesn't mean anything. You still have to be tested again in a few months." He said he could not treat me and referred me to another dermatologist, Dr. M- (the current world expert on psoriasis just happens to have an office 10 minutes from where I work.) Oh, he also said the biopsy came back as psoriatic. Have a nice day, pay the receptionist on the way out.
Dr. M- was on a lecture tour and I could not get an appointment for a week. When I finally got to see the doctor, my skin had cleared up a lot. I was using the cream, sleeping a lot, and soaking in Alveeno whenever I thought the itching was going to kill me. He looked at me for about two minutes, and then told me to get dressed. He said that my skin would continue to clear up on its own, was probably triggered by a recent case of bronchitis I had, and he would not treat me until I got insurance because of the cost involved. Make the check payable to my office and have a nice day.
Well I did, mostly. But here it is early Feb. and I still have lesions on my arms, feet, hands, legs and groin. I have insurance now; unfortunately, Dr. M- does not take it because "they have been difficult to deal with in the past." So, today, I was looking on the Internet for another doctor who performs PUVA in my area who will accept my insurance. I think I am going to have to call the NPF, I know they maintain a list of dermatologists.
That is my story, it is far from over, but with psoriasis, I have come to realize, the story is never over. I just wanted to get all of this off my chest.
Thanks for listening.... Paul M.