Re-shared from Reddit
This may be long, so I apologize. I just felt like I needed to tell this story and felt this page was the most appropriate.
For about the past year and a half now, I have been having an issue of my hands getting very red, swollen, and painful. I decided to see my family care doc to discuss the issue, seeing as how I have a long family history of arthritis, with my mother being diagnosed with it in her 30's. My PCP was actually able to catch me in his office during a flare up of it, and immediately wanted bloodwork. It came back with a slightly elevated ANA, but as I'm sure most of you know, there is a small subset of the population that have slightly elevated ANA levels but have no pathological consequences. But due to my family history and the obvious presentation of swelling, he wanted to get me in to see a rheumatologist. He knew I was about to start med school, and he knew I was in pain and wanted to help.
He tried referring me to every rheumatologist in the city, none were willing to see me. And I get it, there's a lot of people who deal with chronic pain that can be managed by a PCP/pain management specialist, but my PCP knew that this was something that needed to be seen by a rheumatologist. He was able to get an old med school friend of his to agree to see me in a town about an hour and a half away. But due to the pandemic, I had just started med school and really didn't have time to justify 3 hours of travel at that point in time. My mother recommended me to her rheumatology office that she had recently moved over to since her old rheumatologist was out of practice. She said they were the only people she could get to see her (she's had RA for the past 25 years, mind you).
So I make an appointment, but the receptionist tells me its with an NP. I politely ask to see a physician, and she said they had no physician availability. At this point, it was so hard to make it through the days that I just agreed. I went and described my symptoms, and showed her images of my hands when they were swollen vs when they weren't. She asked about a medication I had been taking for a while, and I told her it was for my IBS that I've had for years. She sends me to do blood work but says she thinks I have scleroderma (bc of the hand pain and GI issues...). Thought it was a stretch, but she at least gave me an Rx for sulfasalazine for the swelling. Bloodwork comes back, no elevated ANAs. But she still continued calling it scleroderma. I asked her how that could possibly be, seeing as how all of the antibodies specific to scleroderma and my ANA came back negative. She responded that "if that's what it's behaving like, we'll continue to call it that and treat it like that." I was also having severe knee problems a few months later, and she wouldn't do a physical exam or XRAY, just gave me a steroid shot and sent me on my way. She also wanted to refer me to a pulmonologist because scleroderma is associated with pulmonary hypertension... Which would have just been more time and money wasted.
My angel of a PCP called me to let me know he had personally called and spoken to a rheumatologist in my area, told him I was a medical student (before he mentioned to him that I was a med student from his alma mater, he didn't want to see me) and he was quick to have his office set me up an appointment. I go and he does his physical exam, looks at the images I have, gets more info on my family hx, and sends me for XRAYs. He said he thought the office I was previously going to was completely unethical because the physician who "supervises" the NPs actually had an office in a city about 2.5 hours away, and does not actually work at the location in our city. I was baffled that this could even be allowed to happen. We get my bloodwork and XRAYs back, bloodwork was largely negative, but rheumatoid and C reactive protein were elevated from my previous bloodwork. The XRAYs were confirmatory for arthritis in both my hands and knees, and he believes the pattern to be more inline with a seronegative RA.
I come here to tell this story to say that I was mishandled, misdiagnosed, and discounted for MONTHS because I saw an NP with no supervision. I was desperate, and I had no other options. I am so saddened that it took me being a medical student to actually be able to see a physician. I hate that had I just been a regular woman in my 20's, I would have had to receive subpar, and incorrect care. My family care doc fought for me when no one else would. He took my case home with him and genuinely cared about getting me help. Thank you to all you PCP's out there who don't settle. I hope that we as physicians/future physicians will fight for our patients to receive the care we know they deserve.