All of my persistence paid off—I got my shot today. However, after this afternoon’s visit, I’m even more confused and concerned about my illness.
Excuse me for a minute while I haul out my giant binder with all my medical records…
Last summer when my rheumatologist diagnosed me with Reactive Arthritis (ReA), she mentioned that it could still be Rheumatoid Arthritis (RA). Because I’m seronegative, though—meaning my rheumatoid factor, sed rate, double stranded DNA, and HLA-B27 blood work is always either borderline or in the normal range—she decided to treat me as if I have ReA.
Side note: I need to start tracking my blood work levels; even though they’re always in the normal or borderline range, I need to chart them to see if they’re increasing at all—even if in small amounts.
This afternoon, while my rheumatologist prepped me for my cortisone injection, she said she felt bone spurs in both the small joint of my big toe, as well as in the large joint (that giant joint right under your big toe). I’ve been having trouble with both of these joints, so it makes sense.
While I was chasing doctors trying to get my right hip taken care of, scan results showed bone spurs in that joint, too. At the time, I was seeing an orthopedic. There was talk of surgery, and then all of a sudden I was told I wasn’t a candidate.
Nothing was ever resolved. I simply got used to the severe pain. And I got myself a cane.
Around the same time, x-rays showed a sclerotic lesion, AKA “bone island,” on my left ankle. I had a bone scan done to make sure it wasn’t anything cancerous and everything came back normal. According to the Department of Radiology at the University of Washington, “bone reacts to its environment in two ways — either by removing some of itself or by creating more of itself.” Sclerotic lesions occur when whatever is happening to the bone in question is occurring over a long period of time (as opposed to rapidly). “If the process is slower growing, then the bone may have time to mount an offense and try to form a sclerotic area around the offender.”
What might be eating away at my ankle and causing my bones to armor up? I can safely rule out cancer and injury to my ankle. UW’s radiology article lists several causes, two of which are autoimmune and inflammatory diseases.
The puzzle is starting to come together.
All of the signs are pointing toward something degenerative. My rheumatologist mentioned something about osteoarthritis (OA) while she all but ran out of the exam room. (She’s leaving the practice at the end of this month, so at this point she’s just done.) I asked how that was possible, since I’m 27 and definitely not a runner. She basically brushed me off and suggested that I might have OA as well as ReA. I don’t think this is the case.
My gut has been telling me over the last decade that my arthritis is degenerative (like RA). One of my biggest concerns has been my joints deteriorating as my autoimmune disease progresses. I’ve been questioning whether I actually have ReA since last year, but even more so as I chatted with other ReA patients in a Facebook group. My symptoms are similar to theirs, but there are a lot of inconsistencies.
For one, most of the ReA patients could connect the onset of their arthritis with or right after an infection of some sort. I had mono before I got sick, but that was a whole year prior. There’s very little research on mono and ReA, but most articles cite strep, bacterial intestinal infections, and STDs as causes of ReA. Not mono.
Since I just got the cortisone injection in my toe today and I’ll be transitioning to a new rheumatologist at the practice, there isn’t too much I can do about this puzzle right now. My rheumatologist insisted that if the toe doesn’t get better, to follow up with a podiatrist in the meantime. I don’t love the idea, but my best friend made a great point: a podiatrist specializes in all of the tiny bones of the foot. If I end up needing surgery, he will be the one to do it. He’ll also be able to give me fast relief. While it’s true that a podiatrist can’t treat all of my other aching joints, I can’t screw around when it comes to my feet.
I need that specialist—especially if this is RA and it continues to progress.
She’s right, of course. I’m just frustrated, and tired of seeing nineteen doctors every time another joint goes. I guess I just thought I was done playing the doctor hop game; I thought once I had a diagnosis, I’d just have to do regular followups and keep taking my SSZ like a good girl.
But of course it’s not that simple.
My rheumatologist said the shot could take a couple of weeks to work, and to go easy on my toe. No flip flops—or at least, not cheap ones that lack support. I’m to wear sneakers and take it easy.
In the meantime, I’m in limbo.