With all this new doctor shuffling I’m going through lately, I was reminded of my first rheumatologist. At that time I was on crutches and taking as much ibuprofen as my nurse would allow, and my regular doctor decided it was time for me to see a specialist.
The doctor was good — in fact, he was listed in the top three in his field in Texas and in the top 10 in the US. But he knew he was famous, and he had more of that “doctor” swagger that patients learn to loathe than any doctor I’ve ever met. All appointments had to be made at least two months in advance. When you showed up at your appointment, you would wait a minimum of four hours to get in and see the doctor. Once in his most august presence, you had two, maybe three minutes to be enlightened by his genius, then you were out the door and come back in three months. There were signs all over the waiting room that said “If you don’t want to wait, go to another doctor”.
The first thing he did was tell me that, given my symptoms, I definitely had rheumatoid arthritis. Given my history, he was certain that I had Spondyloarthropathy and Crohn’s Disease as well. A blood test would show the markers for rheumatoid arthritis, a bone density scan would show the Spondyloarthropathy, and a colonoscopy would verify the Crohn’s Disease. In the meantime, he took me off ibuprofen, gave me a prescription for a common arthritis drug and handed me paperwork for all the test referrals. I was to come back in three months.
Three months later I’m sitting there at his desk again, and telling him that the medicine he gave me is doing nothing to help. So he wrote me out a prescription for another arthritis medication. Meanwhile, the tests were in. Although the blood test was negative for rheumatoid arthritis, he said that meant nothing since the test had a 28% false negative history. The bone density scan did show some problems with my upper and lower back, although there are a number of things that could cause that. Like, the multiple Judo injuries I’d suffered in my years on the mat. The real problem was the colonoscopy. I was clean as a whistle (so to speak). No indication of Crohn’s. He looked at the reports, and said to return to see him in three months. If the medication he’d just prescribed didn’t work, I’d have to start on Humira, a biologic medication. So he gave me a referral to see a communicable disease specialist.
Now, the thing about Rheumatoid Arthritis is: it’s an autoimmune disease. The body’s own immune system starts attacking the stuff that pads the joints and doesn’t stop until there’s nothing left but bone on bone. Biologic medications work by suppressing the immune system. Of course, that’s great if you are generally healthy and your insurance will pay the load (up to $5,000/shot), but once your immune system is suppressed, an infection of any kind can run rampant through your system. People on biologics also tend to come down with things like tuberculosis (TB), pneumonia, and staph infections. And way too often certain cancers are showing up in those patients as well. So you have to be cleared of those things before you’re allowed to take the medication. As you can imagine, I wasn’t totally convinced I wanted to be on a biologic.
However, the visit with the communicable disease specialist was enlightening. I’ve always had a positive reaction to the standard TB test (called a TB Tine), forcing doctors to X-ray me to see if I have an active TB infection in my lungs. The X-rays have always been negative. But the specialist explained that, contrary to what I’d been told as a child, this wasn’t a problem with the test. I actually do have TB. But it’s dormant and is not communicable. They call that Latent TB, and a lot of Southern people my age have it. It can be cured, but the process is hard on your body. The specialist felt that, what with my age and general heath, I was unlikely to survive the cure. So until such time as the TB became active (and there was almost no chance of that), I should just leave things alone. In other words, he refused to recommend treatment in my case.
The next arthritis visit started with me telling the doctor that the new meds weren’t working and I couldn’t take a biologic because of the latent TB. After arguing with me for a minute (he wanted me to take the TB cure so that I could take the biologic), the doctor leaned back in his chair and asked “How’s your Crohn’s doing?” Knowing that doctors see a lot of patients every day, I understood how easy it was to confuse patients. So I simply told him that I didn’t have Crohn’s. To which he replied, with a bit of an edge to his voice, “What makes you think you don’t have Crohn’s?”
“The GI doc that did my colonoscopy told me I don’t have Crohn’s.” He sat up straight and looked at me for a minute, and then started thumbing through the paperwork in my file, obviously looking for that doctor’s consulting note. While looking, he asked me “Then why did you have a colonoscopy if you don’t have Crohn’s?”
“You ordered the colonoscopy.”
He found the note, read through it, and then slammed my file down and glared at me. “You file says you have Crohn’s. So what idiot diagnosed you with Crohn’s?”
He just sat there and stared at me. I’ve never seen a doctor look like he wanted to hit me before, but he did. Finally he shoved a piece of paper at me and told me there was nothing for him to do for me at this time. He put me back on ibuprofen and said to see him in a year. The paper was my passport out and back. When I handed it to the receptionist, she asked, “And when did he want to see you again?”
“He doesn’t want to see me again. I’ll be seeing someone else from now on,” I responded. She kind of nodded like she understood, and took my money. When I walked out through his doorway, I felt like I’d just been released from prison. Although I’d spent nine months putting up with this jerk and was back where I started, I had learned a couple of things. And frankly, at that point, I was just happy to escape with my life…