A long road to a PsA diagnosis

My journey began 10 years ago with psoriatic arthritis. My first recollection of “something strange” being amidst was 10 years ago when most of my toenails fell off. When I told my PCP he tilted his head to the side and said “hmm, that’s strange," but did not investigate it further. My toenails eventually grew back so I thought nothing more of it.

Searching for a PsA diagnosis

Over the course of the next seven years, I started to suffer from extreme fatigue (very scary because I was always falling asleep behind the wheel), numbness in both arms, extreme neck pain, lower back pain, and eventually extreme pain in my feet. During those seven years, my health was declining along with my mental state. My relationship was falling apart as well as my career.

I went from doctor to doctor trying to figure out what was wrong. I saw 3 neurologists, 1 neurosurgeon, and a chiropractor. The diagnoses ran the gamut from carpal tunnel syndrome, sleep apnea, fibromyalgia, thoracic outlet syndrome, to Morton’s neuroma. I know none of it seemed to be correct but I went along with every doctor and tried many treatments.

Experiencing extreme foot pain

Finally, seven years later I ended up in an ER due to severe pain in my foot which I could no longer walk on. The X-ray showed nothing and once again I felt like no one believed me about the pain I was experiencing. I was referred to a podiatrist who injected my foot (incredibly painful and made the situation worse). The podiatrist continued to listen and be persistent despite more imaging that showed nothing.

We decided the best thing to do was surgery because she thought there was a neuroma in my foot that was just not showing up in the images. I was so desperate I was willing to go along with the surgery despite the lack of imaging evidence. Luckily, we continued to move forward with the plan because that’s how I finally received the correct diagnosis of PsA.

Abnormal bloodwork aids diagnosis

Two days prior to surgery my pre-admission testing came back which revealed abnormal bloodwork with high elevations in the inflammatory markers. The podiatrist called me immediately to cancel the surgery and referred me to a rheumatologist. This is finally where things turned around for me. The rheumatologist quickly diagnosed me with PsA.

All of a sudden everything made sense about what I had been going through for seven years. I was relieved to finally have a diagnosis that made sense while at the same time being scared of the unknown. It has been a very long road and after three years of treatment, we are still trying to figure out the correct combination of medicine. Every day is a different challenge because of pain, constant doctor appointments, problems with my liver, injections, changes in treatment, and not being able to live life normally. I still struggle mentally and sometimes I do break down, but I thank God that I have a good team of doctors that are in my corner to cheer me on.

You are not alone

One of the hardest things to deal with was the feeling of being a hypochondriac and no one believing what I was going through, but now my family is supportive and my relationship is back on track. My advice to others is to be patient, know when to say no to activities, and stay positive. This website has helped me to not feel alone so I wanted to give back to another person with PsA to let whoever you are know that you are not alone.