Understanding Axial Spondyloarthritis - Episode 11

Timeline of NrAxSpa Onset to Correct Diagnosis

Tiffany Westrich-Robertson: The original onset was 2007. And it was 2008 before I got to the first rheumatologist. And she ended up diagnosing me originally with undifferentiated connected tissue disease. She said, “I know something is wrong in the autoimmune field. I know it’s probably some type of arthritis. However, I can’t, nothing is formed enough.” So she called it “undifferentiated connective tissue disease.”

She said, I’ll never forget this, she said, “I need to watch and wait for you to get worse.” And I sat there and I thought, “She just said I’m going to get worse.” And I already had such a terrible quality of life I thought, “You’ve got to be kidding me. You’re going to wait and watch me get worse.” I laughed. I went and sat in the car and I cried. And, I mean, I’m like starting over, getting teary-eyed just thinking about it right now.

I thought, “This has been a year and a half. Nobody knows what’s wrong with me. I have severe quality-of-life-issues. She’s not giving me any treatment, and she’s going to watch me get worse.”

So in that timeframe, between then and then when I had a severe pain in my jaw, and I was sent, my doctor at that time said, “You need to see a different rheumatologist.” And he put me in with somebody on an emergency basis. And from that timeframe, that was 2007 to 2009, to explain sort of the difference in how I had progressed from that time, starting with just that, that general fatigue and feeling tired, by the time I sat in that second rheumatologist’s office, I was a shell of who I am, literally a shell. I sat there and I remember being slouched. I had my head resting back against the wall, because I didn’t even have the energy to sit up straight.

When I walked in, he did an assessment. I had 20-something joints affected by that time, and look at it, we’re over 2 years now. I had been sleeping for 16 hours a day, and I had a fever for 4-1/2 weeks that hadn’t broken. And he said, “I think it’s rheumatoid arthritis, if I had to bet.” So he took all of the labs and he took imaging like they had before. Then he put me on methotrexate and he said, “If it’s something, autoimmune arthritis related, you should have a response.”

And [he] sent me home, and a week later I came back and he didn’t even recognize me because I was joyful, I was awake, my fever had broken. So we knew we were on to something. But my labs came back normal again. And my images were normal again.

So, again, my labs came back normal, my images came back normal. And he did say he was surprised because of the condition that I was in when he saw me the week before. And I thought to myself, “Oh, here we go again. They’re going to tell me there’s nothing wrong with me, they can’t do anything.” But instead he said, “Clearly the methotrexate did something. I’m going to diagnose you with seronegative rheumatoid arthritis, because at least it’s going to get you on the path to treatment. But I’m telling you right now, it’s atypical. It is not textbook, and it could morph and end up being something else.” So that was kind of the start of how I got my first diagnosis.