Several times I’ve had to be dragged kicking and screaming to medical treatment. No one else did it for me; so I had to learn to drag myself. It was a long and harsh journey, but I determined to be an empowered patient and no longer an ostrich hoping that ignoring problems makes them go away. I don’t take too much credit for this decision since a terrible disease drove me to that point.
That determination is being tested severely. I want to share my story with you.
The results of the long-awaited bone scan indicated that I had no sign of “metastatic or osteoblastic lesion.” Since the purpose of the test had been to look for inflammation (from Rheumatoid Arthritis) and not cancer tumors, I called the radiology department and inquired about whether scans are ever re-read. The technician stated (verbatim – I took notes) “Our radiologists do not re-read. They’re competent radiologists.” I asked whether it would be possible to ask a radiologist a question about my report. He said, “They do not talk to patients. They are going to feel insulted that you called. You see, you’re not a physician. You’re a patient. And you’re trying to tell them they’re wrong, you understand?”
Thinking about the facts
My doctor had told me that every patient of his/hers gets a “negative” result on their bone scan and only ordered the scan because I requested it. I kept staring at my images and reading articles about scans. I’d talked with three patients who had “positive” results on this same type of scan. They said that my scans looked like theirs. Ultimately, I wondered whether there is a problem with how scans are either read or performed when 100% of RA patients from a practice have negative results. The times for my scans were all shorter than the recommended lengths. I started to worry about whether there was a problem. I read: “Normal radiotracer uptake in the bones appears as a uniform gray in the image.” Uniform gray does not describe my scans.
The more I learned, the less my scan made sense to me. What effect did it have that my scan was performed in 25 minutes when other patients told me it took 45-60 minutes? Websites such as Lakeview Imaging confirm the longer time under the camera is needed. My hands were scanned separately, but for only 5 minutes, not the 10 to 30 minutes as described on various sites such as Diagnose Me. Scholarly articles over the last twenty years indicate that bone scans can successfully reveal RA inflammation because it “allows visualisation of synovitis in patients with RA,” Annals of Rheumatic Diseases.
Asking my doctor
Since only a physician can request a second opinion of a scan, I sent a note asking my doctor if I could please have that done. Upon receiving my letter, my doctor sent me a letter terminating me as a patient. I called the office expressing surprise and disappointment, but I was told, “The doctor stated that the scan is not to be used to diagnose RA activity so it would not show anything. The doctor will not order a re-read.” Fighting back tears, I asked, “Am I still fired?” The manager said, “Yes, that is the doctor’s wishes.”
Fear is the problem
Perhaps my doctor ordered the test to pacify me and lost patience when I requested a second opinion. I asked my friend ePatient Dave how it had all gone so wrong. I was willing to hear the truth. He explained his view:
- Patients have a right to ask even unreasonable-sounding questions if they need to; and mine are reasonable questions.
- We should not feel fear to ask questions about what is going on with our own bodies.
- Sadly, this response shows that their priority is not my well being.
Relaying the events to a friend that evening, things were clearer. I spoke passionately: “We should not be afraid. This is my body and my life. I should be able to politely ask questions without feeling fear.” There is enough fear from the disease and the medications. I am tired of living in fear that a doctor will reject me.
My first step to resist fear was writing the swelling confession one year ago. I felt afraid that my symptoms were unusual and that I’d be rejected for revealing them. I gained courage because I finally had a trusted doctor who validated my symptoms and was more concerned with treating them than talking me out of them.
It was a major turning point for our online community. There are over
200 370 comments that paint a picture of RA that had not been painted before: swelling does not specifically correlate with pain, disability, or damage. Thousands of us have discovered we are not alone and are no longer afraid to discuss the relationship between disease activity and swelling.
I admit to having fear right now that some doctors who’ve read or promoted my blog will turn away at this point. Of course I’m afraid that readers will become more timid toward their own doctors after they see what happened to me. And I’m afraid I won’t find another doctor to skillfully treat my RA.
I’ve determined that I won’t be trapped by fear. Our health depends upon our ability to bring honest questions and have discussions with our doctors. Our well being and our lives are at stake – that is worth the effort to collaborate.