My Psoriatic Arthritis Diagnosis Experience

Last updated: October 2019

Last weekend I sat on a patient panel (with 1 other patient) in front of 103 resident dermatologists at their conference in Philadelphia.

Challenges with diagnosis and misdiagnosis

I was supposed to talk more about my psoriasis the other patient geared more towards psoriatic arthritis. In sharing my story I thought it seemed appropriate to share my PsA diagnosis but I would not dwell on that part. I figured a little about how I had to diagnose myself may help them in the future to make sure they recommend their patients to a rheumatologist if they notice any symptoms. I mean 1/3 of patients with psoriasis will wind up with psoriatic arthritis, and once you hear my story you will probably agree with me that the number is probably a lot higher since people can be misdiagnosed considering there's no cut and dry test.

The way we are diagnosed is simply by the process of elimination. They run tests for other types, rheumatoid arthritis, etc. The National Psoriasis Foundation is currently working with scientists to hopefully avoid this in the future by coming up with a blood test that will say "Yes PsA" or "No something else." Yay!

New concerning symptoms

Way back in 2009ish I had a big black and white pitbull named Syrus (yes his real name and I have permission to use it.) He was almost 80 pounds and would come up onto the bed and literally stop and fall right on me. Other times I would wake up and he would be stretching his legs pushing on my back and I would be right at the edge of the bed. When I would wake up in the morning my back would hurt. A lot. I blamed Syrus for my back hurting almost every morning until... I was sitting on the patio one morning and looked at my fingers to check the length of my nails. I think I need to cut... OMG! My fingers! It seemed like out of nowhere my fingers were all crooked.

Being dismissed by the rheumatologist

Having had psoriasis since 2007 I knew that I must have psoriatic arthritis now too. I then made an appointment with a rheumatologist and waited the 3 or 4 months for my first visit. The doctor asked, "Why are you here?" I explained the situation, he gave me a once over and told me "You have a little Osteo, go home and take an analgesic". I thought really? No blood test? No X-ray? What?

Finally getting a PsA diagnosis

I then found another doctor, waited the wait once again, and he asked me the same question, "What are you doing here?" I pointed to the wall where there was a poster with someone who had psoriatic arthritis for many years whos hands were very badly deformed, and I said, "I don't want to be like that." I then gave him the same explanation as the first doctor and he sent me for X-rays and took blood right there. A couple of weeks later I went for my second visit and he said he agreed with my diagnosis of PsA. He then went on to say that I wasn't bad and most of his patients come in every 6 months, and I would only need to come every 6 months.

Even though the diagnosis of PsA isn't a good one, to know it was caught early on means I can take measures to prevent future damage. Hopefully, I will continue to be able to do all I can do now for the rest of my life.

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