The Arduous Road to My Diagnosis, Part 4: The Home Stretch
Editorial Team: This four part series details Dyana's sixteen year journey to receive a diagnosis for non-radiographic axial spondyloarthritis. Click the following links for Part 1, Part 2, or Part 3 of her story.
By fall of 2018, I felt defeated after being bounced around so many specialists that eventually led to feeling let down: vascular interventional radiologist, the second opinion rheumatologist, and the nerve specialist. Throughout this whole time, my hip pain was not improving. Even worse, I started to have pain in my left hip.
I asked for an MRI
I did not wait to see my hip doctor this time and I asked for an MRI for both hips. Sure enough, I had torn my labrum in both hips, as well as having mild femoroacetabular impingement in the left hip, and bursitis on both hips. He told me that about 25% of patients can tear their labrum of the non-operative leg within eighteen months after having hip surgery; I was right on schedule!
I needed another surgery
My hip doctor and I decided to do one last hip arthroscopy on my right hip at the end of November 2018, knowing if it were to fail, then my options would be: a hip replacement at the tender age of 34, or a periacetabular osteotomy surgery to salvage my hip. Unfortunately, both were rather invasive given we still didn’t know why this was happening to me.
The third hip surgery was similar to the second, where he did a labrum debridement, partial synovectomy, and removed the minimal scar tissue that was present, which was an improvement from the prior surgery. What he found was my body finally showing its hand: my hip joint was fire-engine red, full of inflamed synovium. After the surgery, he told my husband and me that we really should revisit the rheumatology angle.
I looked for a third rheumy
With a renewed focus, I began searching for a third rheumatologist to review my history and see if they could solve this riddle that was my systemic chronic pain. It all came down to a referral from a friend that I’ve known since elementary school who assured me her rheumatologist would solve it; the only catch was there was a 6 month wait, so I immediately jumped on the waiting list.
I got my hip doctor to submit a formal referral, along with all of my medical records that I could find. I continuously called their office to see if there were any cancellations. Upon reviewing my case, I got a call asking to be seen three months sooner. I wasn’t sure whether to take this as a good or bad sign.
I felt like she understood me
Sure enough, my friend was right. As I was telling her my history, the same one I have shared here, I could see the wheels turning in her head. I saw her concerned look on her face as I shared my photos from each surgery, especially the third surgery with my super angry, super red hip joint.
She shared her thoughts with me, that she felt I had the clinical signs but needed to order a few tests to be able to confirm it. We ran over twenty-five blood tests and every single one was normal, which she said can happen. The last diagnostic test she needed was a radiograph of my sacroiliac joints to check for fusion, which I did not have any.
Finally I got a diagnosis
On April 11, 2019, I reached the end of my diagnosis journey. I was finally given the long-sought-after diagnosis of non-radiographic axial spondyloarthritis. It took me sixteen years of back pain, being evaluated by three rheumatologists over roughly a six-year time period, and countless specialists to get my diagnosis. The next time I saw my hip doctor, I had a smile on my face for perhaps the first time ever in his office. To say, “persistence pays off” is an understatement.
Does reading AxSpA patient stories help you in your journey?