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Misdiagnosis – How can Patients Help Doctors?

By April 9, 2017August 20th, 2017Advocate, Caregiver, ePatient, Researcher

The Washington Post reported this week about a study done at the Mayo Clinic where 20% of patients seeking second opinions were completely misdiagnosed, 12% received a correct diagnosis, and the rest (67%) got partially correct diagnoses. Also this week I heard from readers about their experiences with primary care practitioners reluctant to refer them for specialty care when they clearly didn’t know what the problem was, to diagnoses so wrong that definitive treatment was delayed for months and years with resulting stress, worry, uncertainty, and poor quality of life.  My MS was treated as heart disease for 25 years. What’s the implication of misdiagnosis? A 2009 article in the Archives of Internal Medicine classified 28% of diagnostics errors as major (resulting in serious harm or death). When people speak of evidence-based medicine it’s assumed that that evidence is based on a correct diagnosis. I understand that diagnosing is an art and a science. As Mark Graber of RTI said in the Washington Post article “There are 10,000 diseases and only 200 to 300 symptoms.” None of us are infallible, errors are bound to happen.  How can we as patients and caregivers help prevent diagnostic errors? After all, we are members of our own health team.

We can keep a diary of our symptoms, labs, medications, and treatments and copies of our medical records. I find that describing symptoms is tough.  I often don’t have words for what I’m feeling – I’ve said to my neurologist – it’s  discomfort in my lower legs. It’s not sharp, it’s sort of electric with burning sometimes. It’s worse at night. I also don’t know what’s connected. Are a sore throat and this discomfort in my legs connected? I err on the side of including everything that feels different. I can say how long I’ve had a symptom, what makes it better or worse, or what time of day it happens.  I find that my doctors respond better to description uncertainty and over-reporting (according to me) than me telling them what I think the diagnosis is. Often they’ll want to try stuff to see if it helps.

If the diagnosis doesn’t smell right to you, speak up and ask questions.  You can insist on a referral to a specialist or a second opinion. Good doctors welcome questions. A questioning patient is more likely to follow the treatment prescribed.

Once we receive a diagnosis, we can ask our doctors how we will know that the diagnosis is correct or that the treatment prescribed is working. How many days until we should feel better.? What danger signs should we look for if the condition worsens significantly? For example, you should feel significantly better in 5 days. If you get more short of breath let me know immediately. If you’re short of breath with sweating, go to the emergency room. Find out the best way to get hold of the doctor or clinic if you have a question.  Call, use the portal, come in to urgent care hours? My better doctors ask me to let them know how I’m feeling – we use the portal to communicate. They want to know if the plan works. I love hearing thanks for letting me know or come back in this week and we’ll see what’s up. We can help each other be a better team member and minimize misdiagnosis. I wish I had known this 25 years ago.