The Arduous Road to My Diagnosis, Part 3: On The Hunt
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 4 of her story.
The spring of 2018 marked the beginning of actively being “on the hunt” for a diagnosis, all while continuing my physical therapy regimen. My general practitioner and I ran a gamut of blood tests, including a tick-borne panel at my request (which was negative).
I had to advocate for myself
However, it revealed I was vitamin D deficient; this could account for muscle pain and fatigue, which led me to begin taking vitamin D supplements. With no clear answer from my bloodwork, my hip surgeon and I had to think outside the box. He felt that there were a few possible causes that we should rule out: gynecologic, rheumatic, or nerve entrapment. This was the time to be my best advocate for my health.
Was it gynecologic?
First on our list was whether my pain was from a gynecologic issue. In 2015, I had a bout of colitis that landed me in the emergency room and the CT scan showed dilated pelvic vessels. I needed to find out if I had pelvic congestion syndrome (PCS), which is the second most common cause of pelvic pain in women behind endometriosis. I had a transabdominal pelvic ultrasound and an abdominal CT, which were both normal.
I then saw a vascular interventional radiologist to consult with her about PCS. I wasn’t the textbook presentation, so that was unlikely to be the root cause of my hip pain, however, the procedure to actually diagnose PCS was denied by my insurance company. We tried a steroid injection into the iliopsoas tendon and bursa which did not help, so it was back to the hip doctor I went.
Back to the hip doctor I go
After that let-down, I saw my second rheumatologist, though she wasn’t convinced by my years of symptoms. My blood-work was mostly normal, with the exception of a historically mildly elevated C-reactive protein test (CRP), which detects inflammation in the body.
The highest my CRP ever got was when my gut issues were at their worst during veterinary technology school from 2012 through 2014, when my stress was at an all-time high with juggling two jobs and school. I was under the care of a gastroenterologist at that time who ordered a colonoscopy. It was then I was diagnosed with irritable bowel syndrome. This second opinion rheumatologist plainly said, “I’m not putting you on biologics unless I have the blood-work to back it up.” She wasn’t convinced and told me to go back to my hip doctor.
My nerve tests were normal
At that point, what was left on the list of possible explanations was nerve entrapment, where I had to see a nerve specialist. By this time, I didn’t have much hope. The nerve doctor ordered a nerve conduction study with EMG to look for any neuromuscular abnormalities. The probe they used looked like a cattle prod! My nerve tests were normal, so he ordered me an MR Neurography test. It’s like a special MRI but to examine nerves. That study was also denied by insurance. After that, he told me to go back to my hip doctor. Noticing a theme here?
By this time, I had been bounced around specialist to specialist and everyone was scratching their heads. I started to feel hopeless, that I would never find an answer. However, hope was on the horizon.
Does reading AxSpA patient stories help you in your journey?