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.

Dr. #1

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.”

being prescribed a med unsafe for breastfeeding

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….

Dr. #2

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.

Dr. #3

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.

having your blood drawn by someone who's shaking

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.

The Upshot

  • 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.

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Comments
12 Responses to “Looking for Dr. Right”
  1. Ruth says:

    I totally feel your pain. We have a high deductible insurance, and every time I have a blood panel done, it’s about $2400. Out of pocket. When I had a bad flare, the same thing happened to me as what happened to you. I couldn’t see my rheumatologist for over three weeks. The convenient care doctor saw me and diagnosed lupus. My PCP then saw me during the following week, diagnosed lupus and adjusted my prednisone dose. But I couldn’t even get through to my rheumatologist for two weeks (something about their phone system), and then when I finally got through, it was more than another week before they could squeeze me in, at which point she told me that she was quite sure I had not had a lupus flare so it was just as well that my primary treated me instead of her. But. She still wanted me to get another blood panel done because, “Now that you are off prednisone and all cleared up, we can get an excellent baseline to compare against the next time you think you might be flaring.” For $2400, I opted to ignore that advice. Meanwhile, that doctor moved to another state. I have an appointment (one of those every-three-month appointments) with a nurse practitioner at the practice, but I need to find a different doctor. However, I don’t know how to find a different doctor.

  2. Leah Givens says:

    Hi– I’m enjoying your blog. Is there a way I could email you (or could you email me)? I’d like to ask you a few questions if that’s OK.

    • lupinelife says:

      Hi Leah, I’m so glad you like my blog! I’d be happy to answer your questions as best I can. At this time, I only have a personal email address, so I’d prefer to correspond through my blog’s Comments rather than email. Please feel free to respond to this thread with your questions. Thanks for understanding.

      • Leah Givens says:

        OK, no problem. Mainly I was wondering if you had particular trouble with the intense sunlight in Albuquerque (with its high elevation), compared to other places you’ve lived. Does it seem to aggravate your symptoms?

        • lupinelife says:

          Yes, I’ve definitely experienced more symptoms since I’ve lived in Albuquerque. The UV rays are intense here–as you said, it’s at a high elevation–so being outside for more than 30 minutes usually leads to muscle fatigue, and if I physically exert myself too much, confusion. I came here from an at-sea-level city in California, and I can say without a doubt that I’ve experienced more disease activity since moving.

          • Leah Givens says:

            Thank you…that’s good information, although I’m sorry to hear it.

            • Juju714 says:

              Hi! About that UV- stay on your toes! I’m in Phoenix and it snuck up on me. Worse malar I’ve ever had! My meds help but since I’m SO sensitive the only real solution is not to go outside. Period.

              Btw- great blog! Hugz, JJ

            • lupinelife says:

              Thankfully, I’m not super sensitive to UV (although that seems to be changing). I try to be good and avoid the sun, but I’m not always good ;). I’m so glad you like my blog! Thanks so much for following.

          • Leah Givens says:

            Sorry for another question…but I’m researching possible places to move. Do you feel like the beauty and other great qualities of Albuquerque (I loved it when visiting, though it made me kind of sick!) outweigh the negatives? I know there may be other reasons for you to live there, though…but I was wondering what location you would choose if you had no limitations. Thanks, if you’re willing to share.

            • lupinelife says:

              Please, no apologies necessary! I’m happy to answer your questions. Yes, there are a lot of things to commend living in Albuquerque: natural beauty, Pueblo culture, and most of the people are just really nice. But since my health has been affected, I can’t enjoy the outdoors like I’d like to, and due to the small population size, the resources for lupus just aren’t there. So overall, I’d say I’d prefer to live in a place where I’m better able to control my symptoms, a place with less sunshine and/or lower elevation. Maybe Northern California or the Northwest? You know what they say: If you don’t have your health…

  3. tattooedpoet says:

    Finding a good doctor totally sucks, and I imagine it is even worse when you have a disease that needs regular maintenance! I would say one thing, though, don’t be so quick to discount nurse practitioners. Some of my very best “doctors” have been nurse practitioners. I’ve found them to be much less egotistical than doctors. They admit when they don’t know, and then they go find out. They’ve also been easier to see and more focused (since they are in less demand than the actual docs). Good luck finding someone who gives a shit and knows their shit. It’s very sad that these two simple things are so hard to find.

    • lupinelife says:

      I surprised myself when I realized I was wary of the N.P.–after all, my mother, mother-in-law, and sister-in-law are R.N.s. And you make a good point: if they don’t know something, they don’t have an inflated ego to prevent them from finding out. It’ll be interesting to see how my next appointment goes–whether or not I see the N.P. or the M.D.

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