April 07, 2015

I was organizing some paperwork yesterday an came across an old pocket calendar from 2006-2007. How did that get in the mix? And why was I saving it? I thumbed through the pages, month by month, and looked at the tasks I had back then, the appointments. The schedule looked so simple when my four kids were so little, the youngest an infant. Then a particular appointment caught my eye, in September 2007, a visit to a rheumatologist. I remember it well. I had been experiencing pain in one hand when I played the piano, shooting pains coming from my pinky finger. Eventually the other fingers started experiencing pain as well. I mentioned it at a routine doctors appointment and he wrote a referral to see this rheumatologist. Getting that referral was frightening; it meant my doctor thought it was something worth sending me to a specialist for a second opinion. I remember that rheumatologist examining my hand and saying that it can't be RA because both hands would be involved and I would have had a positive rheumatoid factor test. So he dismissed me and said it was from overuse. He told me to wear a wrist brace daily until the pain stopped. The brace never did help my pain. After a while I came to ignore the pain, although sometimes it would stop me in my tracks. Four months after that appointment, Maddie was diagnosed with Juvenile Arthritis. By then I was focused on her and completely forgot about any pain I had until the summer of 2010, when the pain became so severe that I was back in for another rheumatologist appointment (different insurance, new rheumatologist). This time I had Maddie's diagnosis to back me up so I was taken seriously, in time. 

So why am I telling this story about a rheumatology visit so long ago? To make the point that we need to do our own research. This rheumatologist did not do what he should have done to make a correct diagnosis. He assumed RA, and when it wasn't RA, he dismissed me completely. Shame on him for such sloppy medical analysis. There are over 100 different types of arthritis and he chose the most common type and didn't even bother to look beyond that. Now that we have the internet, we are privy to the latest medical research. We may not be able to completely diagnose ourselves, but we can certainly come to an appointment well-researched and prepared to discuss all possibilities. Now that I know my diagnosis, and am aware of the symptoms, I can see that this disease has been presenting symptoms for the past 25 years. Had this rheumatologist asked about possible problems with my feet, my jaw, and other joints that are commonly affected by PsA, he might have been able to draw some conclusions early on.