My problems started at birth. I was born with a geographic tongue. We were told it was nothing, just a genetic variance. I now know that it is being considered by some to be a form of psoriasis. When I was young, I developed a rash on my scalp, I still have that rash 40+ years later. I was never given a diagnosis of psoriasis and quit asking about it when I was a young adult.
Fast forward to my early teens, I developed swelling in many joints on the right side of my body only. Elbow, knee, wrist, thumb, sausage toes and even my jaw had arthritic changes during my college years. All blood work came back negative. I was hesitantly given the diagnosis of JRA (now known as JIA) even though my swelling was not the classic symmetrical presentation. I also developed "toenail fungus" in high school. After many different treatments for that I still have it all these years later.
As I entered my 20's things seemed to slow down. I had been told JRA patients can go into remission and perhaps I was there now. With doctors permission I came off my meds and had no problems. However, I don't believe I was truly in remission at this point. I continued to have hand and wrist pain, but I was a graphic artist and spent 70 hours a week in front of a computer. I chalked it up to overuse. I developed a bad "eye infection" in my mid 20's. It lasted around three months before the ophthalmologist finally found the right drops for me. I also began to have an intense deep down throbbing pain in my legs. I even thought that either of these could be the JRA. The leg pain has continued to plague me for years.
In my 30's I had some shoulder pain, plantar fascitis and some knee pain. GP thought it was just overuse. I was a runner and I played indoor soccer in an adult league. He gave me prednisone and had me do PT for all events. It seemed to help, for a while.
In my early 40's, the shoulder pain came back with some elbow pain. I think things started to click for me then. The enbrel commerical were on all the time. I started to put the pieces together. I went to my gp, told him of my history of JRA and asked him if it was a possibility. He did blood work and a ct on my shoulder. He came back and said no, it was not my JRA. He gave me predinsone, and sent me to pt. It worked, for a while. A year later my knee started giving me problems. I saw a different gp since I couldn't get into mine. She did xrays and a ct. She did not believe it to be JRA, just over use since I am a runner. Another round of prednisone and pt. It worked a little. A few months later, the swelling in my elbow returned suddenly and very painfully while I was at work. I was sent to the worker comp dr. I begged to be sent to a rhuematologist. They said they could not, but to tell my GP to send me. I followed up with him again. I let him know what the worker's comp doctor said. He finally sent me, I am not sure if it was because he finally came around, or was just tired of dealing with me.
I finally got in and was diagnosed with a "unknown rash" and polyarthritis. He was sure the rash with the nail involvement was psoriasis but didn't diagnose it. He wouldn't diagnose the PSA either. He started the normal dmards, plaquenil and then adding MTX. Still had some pain. He would occasionally give me shots in my elbow, my most bothersome joint and one in my thumb. My last shot was in October.
After the shot, I moved back to my home town. I found a new rheumy and saw her in December. She took xrays, saw that, unknown to me, I had some minor swelling and changes in my hips. She diagnosed me with PSA officially last month. She started me on Enbrel then. I am hoping that the biologic will give me relief and I can one day get back to running.
So, that is my life long journey to getting a diagnosis of PSA!