When I see my doctor, he doesn’t assume that I’ve reported every symptom; he takes what I’ve reported, looks for patterns, and asks questions to try to fill in the missing pieces so he can get an accurate picture of what’s going on. I thought all doctors were trained to do that.
Some are obviously better at it than others. Throughout her high school years, my niece saw pediatric cardiologists and pediatric neurologists. Now she is in her second year of college and seeing an internist. Last week I heard that she is trying to juggle classes and doctor appointments, and they suspected Crohns. Crohns is linked to the spondyloarthropathies. My niece has Raynauds and symptoms of Crohns.
I emailed my niece a few links so she could read about Crohns and some of the related arthritic diseases. She called me after reading them. Joint pain? Nobody ever asked her about joint pain. She’s had joint pain since she was twelve years old! Knees, hips, and ankles are affected, sometimes shoulders; she has long-term, bilateral joint pain. She doesn’t think to say anything about it; nor does she make an issue of the fact that she breathes regularly. When something is always there, you don’t think to mention it. She just buys ibuprofen in Costco-sized bottles and tries to make the best of things.
Autoimmune diseases such as RA and JIA have a genetic component. It amazes me when this link is ignored. I have Raynauds and RA/USpA. My daughter has Raynauds and ERA. We believe that my father had undiagnosed autoimmune arthritis. My niece has Raynauds and a variety of other health problems that could all be explained as complications of JIA. Even without our family history, it seems like the combination of Raynauds with other symptoms linked to autoimmune diseases would make a doctor include JIA in his list of possibilities to be investigated.
After a long talk with my niece, I’m fairly sure that she would benefit from a thorough exam by a rheumatologist. Now she needs to figure out how to track symptoms (after figuring out which symptoms to track), record what she does that makes things better or worse, any other pertinent data (without knowing what might or might not be pertinent), and respectfully present information to her doctor in a way that will make him consider whether or not she’s had undiagnosed JIA for the past eight years.
It is astonishing that no doctor has ever asked the right questions to put the pieces together. Unbelievable.
Suggestions on what data my niece should track,
and how to artfully feed her doctor the right information
so that he can accurately determine whether or not
she should be referred to rheumatology
would be much appreciated.
Message me if you’d prefer to remain off-the-record: firstname.lastname@example.org