Finding (& Sticking With) The Right Rheumatologist
Sometime in 2012, I found myself sitting outside, enjoying the day. It was a nice afternoon and I was totally taking in the sun, the slight breeze, and from what I remember, enjoying some much-needed weekend time.
As I sat there, I guess I must've stopped to scratch an itch and I looked at my fingers thinking it must be time to cut my nails. It was at that point my day changed from beautiful to horror.
My fingers bent every which way
To my horrific surprise, I found that my fingers were bent in every which way. They were no longer straight. I had to look three or four times, as I just could not believe it. Go ahead. Lift your hand up palm towards you. Bend your fingers back look at your nails. Do you suffer from this type of hand symptom too?
I was diagnosed with psoriasis in 2007. Up until 2012, I thought, at least I don't have the PsA to go with it. That day I knew I was one of the third of the psoriasis sufferers that would soon be diagnosed with psoriatic arthritis. At that moment my mind started racing. I need a rheumatologist, I need medicine.
It's time to see a rheumatologist
I made some phone calls asking for the names of rheumatologists in my area. I was given a name and I made an appointment. After the traditional 2-3 month wait, I finally saw a doctor. He asked me why I was there. I told him. He gave me a once-over and said it was osteoarthritis. He sent me home to get an analgesic and relax.
This didn't sit well with me, I was back on the phone again seeking help. After another couple months, I saw another rheumatologist. He was an older fellow who wore a bowtie. When I explained the situation and showed him the psoriasis on my knuckles, right where the fingers are now crooked, he agreed that is probably psoriatic arthritis. He scheduled X-rays and blood tests. At this point, he diagnosed me with PsA.
Seeing yet another doctor for psoriatic arthritis
Everything was fine for the next couple of years. I started to have a lot of pain in my knees and called to see him. The office told me he wasn't seeing anyone at this point. There's a fairly large medical center near me where I was going for my migraines. I looked at the list of doctors there and found a rather young doctor who specializes in PsA.
I call and yep, 2 months later he runs the same tests. I find out that he also runs the Rheumatology podcast and he's on Twitter, since I'm a total tech junkie this rates very high. He told me that both knees need to be replaced, the left is worse than the right, and he says that we should put it off as long as possible as they will only need to be replaced again in 10-15 years. I start getting injections once a year to help hold that off.
What do I do now?
Last year during the pandemic he started spending more time at another office and I decided to travel the 45 minutes for my injections as he's such a great doctor. This year I go to make my appointment and I am told he is no longer making appointments for these procedures and will be leaving the practice in a few months.
I am devastated. What do I do now? Do I stick with this revolving door practice or find another? How hard is it to find a good rheumatologist? You can find help through the National Psoriasis Foundations Physician finder but I would love to hear other people's experiences.
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?