Participating in your diagnosis

As many of us who are living with Kennedy’s Disease, or other rare disorders, know, the road to a correct diagnosis can take a long time and it might be littered with one or more misdiagnoses along the way. For example, many of us were initially misdiagnosed with ALS.  And, even today, when some unknown health issue in involved, the diagnosis process can be just as long, expensive and frustrating.

The CostCo Connection magazine had an interesting article this month called, “Talk to your doc.” I felt the article emphasized something I have discussed several times in this blog – Advocacy. Dr. Leana Wen, author of “When Doctors Don’t Listen” explains that “often when a patient goes to a doctor, they have a series of tests to rule out problems, and patients often end up learning only what they don’t have, as opposed to an actual diagnosis of what they do have.”

Dr. Wen believes that medicine has evolved to a cookie-cutter approach that often leads to patients being mis- or undiagnosed after suffering the side effects of many unnecessary tests and months or even years of wondering what is happening within their body.

Her book includes the ‘8 Pillars to Better Diagnosis’ to help doctors reach the right diagnosis.

1. Tell your whole story. Even if your doctor is steering you away from a narrative and toward a cookbook world of chief complaints, tell your story.
2. Assert yourself in the doctor’s thought process. Find out what your doctor is thinking as he or she is listening to your history.
3. Participate in your physical exam. As your doctor is examining you, ask what he or she is looking for specifically.
4. Make the differential diagnosis together. Keep asking what else could be going on. Evaluate with your doctor the likelihood of each possible diagnosis.
5. Partner for the decision-making process. Partner with your doctor to devise a plan for narrowing down possible diagnoses.
6. Apply tests rationally. Do not just consent to tests. Ensure that your doctor explains why each test should be done and what the test will help determine or rule out.
7. Use common sense to confirm the working diagnosis. You should reach at least a working diagnosis at the end of every visit to the doctor. Make sure that the diagnosis makes sense.
8. Integrate your diagnosis into the healing process. Once a diagnosis is made, ask questions so you understand the possible treatments as well as the risks, benefits and side effects.

To learn more, visit www.whendoctorsdontlisten.com .