Where is the Medical Curiosity?

on 04 19, 2009

Young Doctor Medical CuriousityMy friends tell me I should be a doctor. I would love to… if only I felt good enough to go to medical school. So instead I watch House, Diagnosis X, Mystery Diagnosis, Mystery ER and other TV shows that make me feel like an expert when I can diagnose the patient before the 100th or so doctor finally does.

In one episode of Mystery Diagnosis, an ER nurse comes down with a mysterious malady that interferes with her ability to work and live daily life.  In the course of trying to find out what she had, she was met with indifference from the very doctors she worked with. At one point, she asks the camera “Where is the medical curiosity?” To me, this said a mouthful.

I also have had an unexplained malady for more than 20 years, and have seen at least 100 doctors. Call it compelled inquisitiveness, but I finally decided out of desperation to do my own research to figure out what was going on with me. I assigned myself to be the investigator my doctors didn’t either have the time, interest or competency to be for me. Surprisingly enough (*read sarcasm*), I was able to diagnose myself within a couple days of applying the following skills:

  1. I started by looking for a health coach. There had to be a doctor out there who was tired of helping lots of patients a little, and wanted to help a few patients a lot. I searched all over the Web, but in 2005 the idea of a coach to help navigate health systems was nowhere to be found.
  2. I turned to what I knew from my work as a project manager.  There are great books out there that teach skills for setting objectives and goals, defining tasks, identifying resources and setting timelines. By considering “getting better” to be a project with a specific beginning and ending, I was able to gain a great deal of objectivity. Doctors became resources rather than authority figures, and asking for what I needed became less daunting when I had specific tasks to accomplish.
  3. I ordered copies of all my medical files from the beginning of time and poured over them, looking for abnormal test results or comments that stood out. In several cases I found references to conditions or symptoms that had been dismissed at the time, but had been diagnosed and treated much later — after years of suffering. I made a list of questions for which to find answers.
  4. Using my health-insurance-covered mental health benefit, I “hired” a psychologist specifically to support me in my endeavor to get better. I reported each week on the progress I was making, vented about ignorant doctors, and shared victories when I found another piece to the puzzle.
  5. I looked up test results on www.labtestsonline.org, a detailed website about lab tests including why they’re ordered, how they’re done, and how results are interpreted provided by the American Association for Clinical Chemistry.
  6. On AuntMinnie.com, I discovered that the quality of imaging tests such as CAT scans and MRIs can vary dramatically between diagnostic imaging facilities, and decided to request repeat tests at facilities I chose after comparing them.
  7. I went to www.medlineplus.gov, the free version of the health information database that many doctors rely on. It is a super-search-engine that brings up results from reliable information sources that provide patient-level guides to medical conditions.
  8. I looked up articles on www.emedicine.com which is a continually-updated resource for doctors and patients, with over 10,000 physician contributors.
  9. I paid for a one month physician-level subscription to www.uptodate.com, which has a team of health care professionals who summarize recent medical articles so patients and doctors can get up to speed about the latest standards in care for specific conditions.
  10. I considered the possibility my condition may be genetic, and did some research on the National Society of Genetic Counselors website.
  11. I joined the forum on the National Organization for Rare Disorders (NORD) website, where I posted questions and read stories of other patients in search of a diagnosis.
  12. I found non-profit organizations and support groups that have resources for people who don’t yet have a diagnosis, including Hormones411, the Autoimmune Information Network and the Patient Advocate Foundation.  There a several good places to look for support groups, including the NORD website, selfhelpgroups.org, and Daily Strength.
  13. Using paperwork from various doctors’ offices as a guide, I created a Word document that listed my medical history including diagnoses and dates, family history,  recent tests, medications and dosages, contact information for other doctors previous and present, and symptoms with comments about what alleviates or exacerbates them. I take this with me to doctor appointments, and as I fill out paperwork I write “see attached” so I don’t have to keep filling out the same information over and over. Or, I give it to the receptionist to have her include it in my file prior to the doctor coming in to see me.

The end result was I diagnosed myself in 2006 with a brain tumor that had given me the symptoms of Cushing’s Disease for many years. To my chagrin, it took wading through several more doctors before I found someone who took me seriously enough to request an MRI. (I was met with comments like “You can’t have that or you’d be dead by now.”)

Then, once I actually held a copy of the MRI report in my hand and jumped up and down with excitement that I had a brain tumor, I thought I was home free. Turns out doctors need a lot of convincing that a brain tumor needs to be treated. Eventually, through the Pituitary Network Association, I found a surgeon in California who, in a couple hours, changed my life dramatically for the better.

Of course, if life was that simple it wouldn’t be very interesting. So, as it turns out, I had another underlying condition that raised its ugly head once my tumor had been removed. Although I believe I have accumulated enough evidence to support a diagnosis, I have yet to find a doctor who will consider my hypothesis as credible. My latest strategic approach was to post an ad on Craig’s List for a Personal Medical Consultant. No solid leads yet, although I did get a referral to an integrative medicine doctor who charges $500 up front, before you even know if she’ll be able to help you.

As far as the ER nurse with the mystery malady, doctors diagnosed her with lymphoma and took out her spleen, subjecting her to bone marrow biopsies and spinal taps before they figured out she had Adult Onset Still’s Disease, a form of arthritis. Watch the Mystery Diagnosis “Frenetic Genetics” episode.

If there is one thing that shows like Mystery Diagnosis and House teach us, it’s that medical curiosity is essential to quality medical care.  There’s nothing like waiting six weeks for an appointment with a specialist, saving up money for the bill and prescriptions, preparing documentation, enduring symptoms, and placing your hope on 15 minutes in an exam room, only to be met by a health care professional who has no interest in the extraordinary, and no willingness to consider the possibilities. But, learning from this all-too-common scenario, using “degree of medical curiosity” as a notch on the measuring stick of desirable doctors  makes it easy to identify the health care professional who is truly going to make a difference for you.

Comments (2)

 

  1. misswaxie says:

    My god does my story sound like yours. And isn’t that horrifying in and of itself? That there could be more than one of these horrible things floating around in the world?

    While I don’t have a brain tumor, after 20 years of being sick, I finally got a doctor who looked past 20 year girl who weighed 20 more lbs than she should, and ran every blood test in the book. Literally, over 60 blood tests in 27 tubes of blood. The hospital made me lie down afterward.

    And what did he find? Celiac disease. hashimoto’s disease. and with the help of emg’s a varrient of cidp (though i’d had others before, no doctor ever read into my test results). I got BETTER under his care – though, i still developed lupus & ra, but that was inevitable, given how many years my system had suffered with undxed autoimmune things…

    …but the part of my story that so sadly feels like yours is that upon moving back home (after i got too sick to live on my own), doctors in this city reviewed my case, my file, my test results and have determined “Nope. I just don’t see a problem here. She just doesn’t have those diseases as we know them.”

    …my endocrinologist in nyc once told me that doctors who weren’t interested in my case weren’t interested in medicine. And that’s the bottom line, isn’t it? The difference between interest in medicine (or medical curosity) and the interest in the *business* of medicine.

    Anyway. I hope the best for the both of us and I SINCERELY thank you for this empowerment. After being told my EMG isn’t even indicitive of ANY problems this past week, I’ve felt crushed – this reminds me i have to KEEP FIGHTING! I know I’m right – and you are too!!

    I write a comic about my often comic adventures in the medical system called A Comic Life, Indeed – you can find it at http://acomiclifeindeed.wordpress.com – and I’d love for you to check it out if you’re ever in need of a good medical related laugh or just to know that you’re not alone in all this madness.

    Wishing you the sincere best,

    – Miss Waxie

  2. bulletpointblogger says:

    Miss Waxie – your comic is genius, saying it all in a unique and telling way! Your endocrinologist hit it on the nose, didn’t he? I’m glad you found encouragement in our shared journey. Barbara at the Autoimmune Information Network should be able to help you find doctors who will take you seriously in your area, and is a font of knowledge about proper testing.

    Congratulations on surviving the medical system of yesterday and today and continuing to fight on! Please do share with us what you’ve learned works in the process so we can create a better experience for undiagnosed patients in the future.

    The Bullet Point Blogger

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