Looking for Dr. Right
I recently changed doctors in an effort to find a rheumatologist better suited to my needs (i.e., someone who actually gives a crap and knows how to treat lupus). But now I’m not sure that I’m any better off.
I moved to Albuquerque, New Mexico, about a year and a half ago, and one of the first things I did was find a new rheumatologist. I was moderately satisfied with my rheumy and settled in for the long haul.
Then about six months ago, I had a bad flare-up: Uncontrollable shaking, fever, muscle weakness, joint pain, butterfly rash. Within a week of this flare-up, I called my rheumy’s office and made an appointment to see him. Of course, they weren’t able to get me in for several weeks, and by then all of my symptoms except some joint pain were gone.
The doctor didn’t ask many questions after I described the flare-up, and he was quick to dismiss my assumptions that my symptoms were related to lupus. Instead, he suggested that I may have gotten the flu–you know, the kind of flu that gives you a butterfly rash and a fever that disappears within hours?
When I told him about the muscle pain I’d been having in my legs, within seconds he diagnosed me with restless leg syndrome and wrote me a prescription for an anti-seizure medication. Besides being skeptical about my diagnosis, I was further annoyed by the fact that I had to ask my doctor if the medication was safe to take while breastfeeding. This last point wouldn’t be such a big deal–if I hadn’t had my baby with me at the appointment. As such, my annoyance turned into a low-simmering rage when my doctor looked up the medication and said, “Oh, it looks like you can’t take it.”
Finally, he told me that he could order some lab work, but that since my symptoms had already passed, “it would be pointless.” His tone of voice and facial expression said, “Please don’t come back unless you’re dying.” So I left his office feeling that I’d wasted my time and money and hadn’t gained any knowledge about the progression of my disease.
To add salt to the wound, I received several letters and phone calls asking me why I hadn’t gotten my labs done. Grrrr….
My insurance covers just two rheumatologists–both of whom work in the same practice. They might as well just offer one doctor because doctors rarely challenge another doctor’s treatment plan and/or diagnosis, let alone a doctor they work in the same damn office with.
I called my insurance to get an expanded list of approved doctors. These are doctors that my insurance will cover the cost of but only a much smaller percentage. I’m also responsible for a higher out-of-pocket cost than I would be if I continued to see Dr. I-Don’t-Give-a-Crap.
I researched each of the doctors and discovered that one was named by Newsweek as one of the top 10 rheumatologists in the country, and he specialized in lupus. I chose him, of course, because although I have a mild case of lupus, I’m tired of dealing with incompetent, ignorant doctors.
I scheduled an appointment months out. I arrived at the hospital where he practices (or so I thought), I parked in Timbuktu and hauled my son through the snow (no joke) and up to the fifth floor. And then I learned upon checking in that they’d made an executive decision to switch me to a different doctor. My doctor no longer practices at the hospital. “They” determined that I’d be best served by this other doctor.
The mystery doctor was nice enough; he asked a lot of questions and had me fill out a questionnaire that helped me to remember all of my intermittent symptoms. But it was also clear that he hadn’t bothered to review my history. At all. He thought I’d been newly diagnosed. He ordered labs and had me return in two weeks to review the results and discuss a plan. Okay, maybe he’s the one.
I returned to the hospital, without my son, to get my labs done. Holy moly. The place stunk of alcohol and cigarette smoke. There was a man passed out in the waiting room. The man who initially sat me down and prepared the nine vials was shaking and looked like he was going through some type of withdrawal.
Luckily, a woman swooped in through the curtained partition and took over just as he prepared to stick my arm. I decided not to return to the hospital lab.
When I returned to review the lab results, my doctor was unavailable. By the way, they’d already rescheduled my appointment twice, giving me a day’s notice both times. I was seen by a nurse practitioner, which is fine for discussing my lab results, but unacceptable to me for creating a treatment plan.
- My kidneys are beginning to be affected and I could use more vitamin D. I need to get my hands and feet x-rayed and drink more water. Hmph.
- I got the first bill about two weeks ago for the lab work. My insurance covered some of it; I owe the hospital $500.
- And then the second bill arrived about a week ago. This was for the doctor’s visit: $200.
And I wonder why I don’t have a savings account…
Next month I’m supposed to have the x-rays taken and get another round of labs. A month later I’m to see the good doctor (or the nurse practitioner), presumably to create a plan.
Is it worth it? I’m not sure. I’m considering returning to Dr. #1 just to be able to buy groceries. Not only is he less expensive, but his laissez faire approach to “care” means less lab work for me. I’m undecided.