The journey that leads to a diagnosis of psoriatic arthritis (PsA) is as unique as the people who have it. Some people exhibit symptoms and are diagnosed at a young age, while others live with it nearly their whole lives without ever being given an official psoriatic arthritis diagnosis. While there are some common characteristics, there are many variables that can make it quite difficult to diagnose.
A visit to dermatology
Some people are diagnosed by a dermatologist. They may have struggled with psoriasis their whole lives and once they developed aching or swollen joints, their dermatologist was astute enough to put the pieces of the puzzle together and refer them to a rheumatologist for further investigation.
Primary care questions
Some people are lucky enough to have a very observant and experienced primary care doctor. They may have recognized that you’ve been feeling overly tired or achy and sore in the morning or evening. An excellent primary care doctor may have also recognized swelling in the joints or noticed the small signs of psoriasis in the nails or a patch on the skin. Usually, primary care is the first stop when you may have questions about your health. The role of the primary care doctor is especially important in validation or dismissal of your concerns. Many people end up waiting significantly longer on their path to diagnosis if their primary care doctor fails to recognize some of the subtle initial symptoms of psoriatic arthritis.
PsA diagnosis complicated by absence of psoriasis
Some people do not develop psoriasis until months or years after diagnosis and some never develop psoriasis at all. Their path to diagnosis becomes much more complicated without the telltale signs of psoriasis to factor into diagnosis. However, they may have other diagnostic factors to consider such as nonlinear inflammation, dactylitis, or the presence of other autoimmune conditions.
Diagnosis via process of elimination
Others are diagnosed by process of elimination. Blood work comes back, everything is “normal,” but you feel that there is clearly something wrong. This is one of the most frustrating paths to diagnosis. It comes with very conflicting emotions. For example, no one wants something to be wrong, but at the same time, you are certain that something is wrong and a diagnosis can reassure yourself that you aren’t imagining your symptoms. You may question your own sanity at times. I know I did. I spent quite a bit of time convincing myself that it was all in my head. But when I finally met with my 4th doctor and second rheumatologist, I actually felt an overwhelming sense of relief at finally having the correct diagnosis. X-rays and MRI’s help assess the extent of damage, but even those need to be diagnosed by a trained eye.
Why is the path to diagnosis so long and complicated?
According to the Psoriatic Arthritis in America 2016 survey by Health Union, 41% of survey respondents visited four or more healthcare professionals prior to diagnosis. When it comes to PsA, diagnosis is rarely clear, simple, or easy. Everyone has their own story about ultimately reaching the correct diagnosis. For some people, it is suspected for many years, for others it can come totally out of the blue. There is not a “one-size-fits-all” approach to a psoriatic arthritis diagnosis which I think contributes to its diagnostic difficulties. The important thing to remember is don’t stop until you are satisfied with the answers. Early diagnosis is pivotal to preventing permanent damage and slowing the progression of the disease.
The path to diagnosis is a windy one, often fraught with missteps and wasted time. The average amount of time it takes for a patient to receive an accurate diagnosis is absolutely unacceptable.This period of waiting takes its toll both physically and mentally. Take steps on your own path, find the answers you need, get the right diagnosis in a timely manner.