I mentioned back in October, that I was in one of the worst flares I have ever had while I was doing all of that travel and conference experience (#MedX and #TXFM). The flare continued when I got home. And added lovely symptoms of fatigue, body aches, congestion, headaches, etc. I had a feeling I would get sick from all of the travel, but it actually took about a week or so to come to fruition.
Coming home, I begged my rheumatologist to help me. In such a high amount of pain, I knew we had to do something. That familiar twinge of doubt was creeping in once more. “We’re missing something,” I said.
Finally, we ran some blood work, measured my inflammation levels, did an x-ray. Results: wonky blood work, and inflammation levels 4 times as high as they should be (and that was directly after an infusion!).
So I was put on the devil drug, also known as Prednisone, for 2 weeks. Oh joy, let’s just gain weight and bloat up from medication even further. Just what I wanted on top of this. The worst part about that is that a full taper of Prednisone didn’t even help me. Inflammation levels didn’t get better and pain was just as bad. I’ve done a whole blog post on this, but I was then put on chemotherapy: Methotrexate. This drug….oof. It’s a doozy. I take it every Saturday night, wiped out on Sundays, nauseous like crazy on Monday and Tuesdays. Rinse and repeat.
We then ran a full body bone scan with contrast to see if there was something there we were missing and if there has been any more progression or damage from the disease. The good news is the bone scan looks the same as it did three years ago. The bad news is that that doesn’t explain my pain, my increased inflammation levels, my reoccurring infections, my consistent flare ups, etc.
Fast forward to seeing a specialist on spinal surgery and spinal cord stimulation. After basically telling me I wasn’t a strong candidate for the stimulator, she explained that her reasoning why is that she isn’t sure that I have Ankylosing Spondylitis.
SAY WHAT!? But that is what we’ve been treating for the past 3 years. Okay, so I obviously wasn’t convinced, and she didn’t want me to jump the gun and think I was misdiagnosed, but this was something to look into further. The physician suggested I get a Pelvic MRI with contrast of my SI joints which are typically what diagnoses a person with Ankylosing Spondylitis in the first place. She also suggested that I might have something like a central nervous system/widespread pain disorder.
So I had that MRI and received the results about a week ago–the radiologist who read the scan came to this conclusion:
The sacral iliac joints show no erosions, fluid, or periarticular edema or enhancement. There is a 12 mm lesion in the right iliac bone deep to the cortex of the anterior aspect of the sacroiliac joint on the right. This has been present and stable in size since 2012. It shows a mildly increased sclerosis along its medial margin and mild activity on the bone scan. This is very likely a benign lesion such as fibrous dysplasia.
The visualized uterus and adnexa appear normal. There is no visible pelvic mass or free fluid.
No imaging evidence of sacroiliitis.
Huh. So where does that leave us? I’m getting a second opinion from the University of Michigan Adult Rheumatology Division in March. And then I will be visiting the previous physician to talk more about the central pain disorder and other indicators. It’s not a definite that I don’t have Ankylosing Spondylitis–especially since I have most of the symptoms of that disease. However, it’s not clear anymore what IS going on with my health.
It’s frustrating. And confusing. And I feel like I just took MAJOR steps back–like 3 years worth. But I’m trying to just hold tight to waiting until March. No major changes or efforts until then. But seriously, it’s just so hard to be an anomaly. Doctors don’t know what to do with me. Medications either don’t work, or work well but make symptoms insane. I’m not a text book case, I never have been a text book case, but I can’t be the only person on my care team that is willing to think outside the box. Because, hello people, I’m also the only person on my care team without a medical degree. My knowledge only goes so far–granted, it goes far, but I’m not an expert, obviously.
So, we just wait. My depression is really kicking my ass lately (I’m working on it, realizing I need more help than I usually admit)–and I’m just keeping my head above water, lightly treading until we can make some sense of this madness. Que Sera Sera, right?