How I Knew I Had Arthritis, Not “Just Cerebral Palsy”

So, I just threw together a pretty detailed thread answering a few questions posed by someone early on the autoimmunity journey and I wanted to share those here, as well as my response to them!

Questions:

1. What do you have?
2. How did you know it wasn’t “just” CP?
3. How did you get a doctor to take you seriously?

I already had explained a bit of each of these in some previous pieces (including New Diagnosis, My Journey to Disability Pride, and my CreakyJoints interview), but I wanted to give this person a bit more of a deep dive in one place, and I’m putting it here to centralize it, too!

---

I have spondyloarthropathy with MRI-proven sacroiliitis mainly concentrated across the right lower lumbar and hip (my CP side). The pain was so different than my typical muscle ache/tightness like someone stuck a hot pointy iron into my hips and didn’t let up. I also had consistent heat coming off the area and it was just ever so slightly swollen. That was the main tell it wasn’t just CP, contrary to what my doctors brushed it off as.

I had to seriously advocate for myself through multiple doctors (PCP, rehab med) with the help of my mom (I’m in peds), before I finally put my foot down to my PCP and said “this is different. Refer me to rheumatology or chart that you refused patient request.” That threat/verbiage request made him write the referral.

My rheum did the typical poking and prodding and declared me a “weird case” but that he “wasn’t saying [I] was making it up.” He ordered 7 tubes of blood and sent me to x-ray then home with methylprednisolone “just to see what would happen.” The x-ray was clear but with HLA-B27+ and the methylprednisolone helping, we ordered a start on sulfasalazine and an MRI.

My pelvic MRI came back with no evidence for ankylosis at the SI joints or erosive changes, but showed patchy loss of marrow fat and subarticular regions bilaterally involving the sacrum as well as iliac bones. Pelvis and included lumbar segments were nominal. The patchy loss of marrow prompted the MRI interpreter to recommend correlation with clinical findings (all the prodding + other blood results), which prompted my doctor to diagnose me with juvenile idiopathic arthritis, separated into sacroiliitis and spondyloarthropathy.

Now, I’m on Humira weekly, as well as leflunomide daily, and those two are my miracle drugs.

---

If you have any questions about your own journey, feel free to DM me on Twitter or email me at [email protected] with the subject line “new autoimmune help” for a hand or a listening ear. Also, I serve as the Outreach Coordinator at the Autoimmune Community Institute, focusing on providing community support and ensuring health equity for all autoimmune patients, so I may have further connections there if I can’t help with your specific condition or needs.

If you found this useful, a share is always appreciated, or if you can and want to tip me for this piece, you can find all of that info on my Support page. Thank you!