Patients as partners: Member Peggy on the diagnosis journey (Part 2)

Earlier this week, member Peggy (peggyznd) illustrated the 2015-2016 Team of Advisors’ Partnership Principles by sharing how to advocate for yourself and work with your doctor in your diagnosis journey. Here, she talks about finding a specialist, questioning your diagnosis and switching doctors. Peggy reminds all patients play an active role in their health: “Be like the parent who must protect and nurture the child, and do the same for yourself.”

Do I have to diagnose myself to get to the right specialist?

You might. Your family doctor may recommend a certain specialist. Not unusual, but if your problem is seen through too narrow a lens, you may not get the best diagnosis. Is the exhaustion you feel due to a failing heart, or is it due to an indolent blood cancer? Is the stomach cramping due to an ulcer or to a parasite which you brought home from a trip? You may start down a path of specialist to a subspecialist, moving away from a broader review to an increasingly narrow. If this does not make sense, or there is no clear resolution of the problem, this is a time to ask, “What else could it be?”

That may call for a return to the family doctor with all the various reports and tests in hand to review all of them. AND you have been collecting and reading ALL your reports, labs and visit summaries as you go, of course. No one is more likely to read these papers more closely than you. Even if you don’t understand them, which is pretty typical, you will understand the thinking behind your diagnosis. Watch for any errors as to the tests taken. Are they complete? What has changed over time? Are the meds accurate listed? Is there is something that simply does not make sense?

What else could it be?

If things do not improve after a reasonable period — you get to decide that period — or get worse, ask the most essential question, “What else could it be?” This may shift things from a less general diagnosis to one which is rarer, or masked by another health condition. Ask the doctor to justify his thinking, and if what he says makes sense to you. That bum knee may not be the cause of the several new falls. Maybe the new high blood pressure medication from another doctor (or this one) causes you to be dizzy, making you fall, reinjuring the knee. See how this works?

Getting nowhere? Or are they just wrong?

It’s hard to change doctors, especially if the diagnosis seems wrong or if errors have occurred in the process. Patients fear that they will be labeled as trouble makers. They may not think the new doctor will be objective with a colleague’s patient, or that there is not a more accurate diagnosis. How does one ask for a second or third opinion or a referral to a large medical center?  You will have to practice saying, “I know you have been working with me on this for some time, and that you want the best diagnosis and treatment for me. Now it seems time to send me on to another medical center/a more specialized treatment center/Dr. So-and So. I will need to gather all my reports and histories, and know you can make this efficient for me.”

Play an active role in your diagnosis and treatment, and do so at the outset. Patients are too often late to realize this, and far too sick to do so effectively. Don’t hesitate to ask for help from friends and family, and from social workers or patient advocate in the system. Again, be like the parent who must protect and nurture the child, and do the same for yourself.



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