Caution: How to Sort Through Medical Advice for RA Patients
This is a rather challenging topic, but one that I think bears some consideration for those of us who must sort out and often make life-changing decisions with regard to our management of RA. Let me explain this through a recent experience I had.
Different medical advice from doctors
I was suffering from some hamstring pain and wondered if that was from a flare in my hip or some other reason. So, the first thing I needed to do was try to figure that out.
He did some hip manipulation and decided it was likely my back and sent me to an orthopedist who specialized in spine issues. That physician suggested that I had sciatica or some other pulled muscle or back-related problem and prescribed a course of corticosteroids. He said that if it was not better in a week to get an MRI.
I asked what he expected that an MRI would show, and he said it would just confirm a muscle or tendon issue. They already had a spine X-ray that I had done prior to my appointment.
I made the correct diagnosis
At this point, I believed that I knew what the issue was, so I elected to not go through that test and instead asked to have physical therapy (PT) prescribed which they did. After eight weeks of PT and with exceptional guidance and work with the therapist, my issue slowly resolved.
What is fascinating about this entire process is that at no time did a physician zero in on the correct diagnosis. I did, along with the PT whom I had to request. My point in sharing this is to point out a few things we encounter as we go through the process of getting a diagnosis and further advice on treatment, etc.
Advice from different specialists
This experience quickly reminded me of what it was like prior to getting diagnosed with RA. The number of different specialists that we often see prior to diagnosis is mind-numbing. I know I was shuffled to several different specialists until I landed with a rheumatologist who finally diagnosed me with RA. I have to wonder why this phenomenon exists.
The specialties and silos of medicine
I think perhaps it relates to the specialties and silos of medicine as we know it today. In the case of my hamstring tear, the PCP had no idea but guessed it was spine-related and sent me to an orthopedist. That physician was totally zeroed in on the spine, despite my very exact pinpointing of the pain being in the area of my hamstring. Thankfully, I did not add my rheumatologist into the mix. Who knows where else this could have gone, which translates into what medications, treatments, etc., might have been suggested.
By eventually being treated by a physical therapist, I had the benefit of seeing someone who treats the whole body and, as a result, does not come at from a “specialty” perspective.
Being our own best advocates
The lesson here for me was that, as with so much of our disease management, we have to be our own best advocates, keep in mind these specialty hurdles, so that we can sort through which advice to take and which to let go.
Be specific when communicating
We also have to be very specific about our symptoms, how the issue manifested, the potential cause (in my case an exercise overdo). In my experience, doctors do not always ask the most relevant questions to the situation so they can use some help in that department. They tend to see patients through the lens of their expertise, which is not surprising. But if we remember all of these things then, we should be able to get to a successful diagnosis and treatment.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?