Want to Avoid a Misdiagnosis? Here’s how…

This post originally appeared on MOMentumNation.com.


Two years ago, a dear friend, AJ was diagnosed with Multiple Sclerosis.  She had a family history of MS, plus years of ongoing symptoms including a loss of balance, blurred eyesight, slurred speech, worsening fatigue and mental haziness (my word)—all symptomatic of MS.

From the onset of her symptoms, AJ visited many doctors. When her diagnosis of MS was finally confirmed by her doctors, they attached terms like “permanent” and “progressive” to the offending initials. AJ was devastated. In time, she was confined to a wheelchair, heavily medicated, and needed around-the-clock attendants. Here was someone who went from a smart, savvy world traveler, to a homebound, confused, exhausted woman who found it difficult to walk, talk, or even stay awake during a meal. Life changed on a dime.

Here’s the good news. AJ was one of the fortunate ones because she had a tenacious advocate—in this case, a daughter who just wouldn’t give up. Although AJ’s posse of physicians (including renowned neurologists) agreed she had MS, one neurologist expressed his doubts. He suspected her condition might be caused by hydrocephalus, an excess buildup of fluid on the brain. It was risky, he said, but surgery was the only way to see what was actually happening to the brain. AJ’s daughter together with the dissenting doctor zeroed in on a surgeon.

They reasoned that if after surgery the MS diagnosis was confirmed, AJ’s condition would get progressively worse her life would continue on a downward spiral.

If AJ’s symptoms were a result of hydrocephalus or other condition, there was hope for significant improvement if the disease hadn’t progressed too far. Only surgery would tell the full story. AJ’s daughter championed the latter option and the family pressed ahead.

The operation was a success. AJ did not have MS. Instead, fluid had accumulated on her brain which impacted both her motor and mental activities. A clogged tube was the culprit. To solve the problem, the surgeon inserted a shunt in the brain cavity to drain off the excess fluid. The result was astounding.  AJ’s balance was restored; her cognition returned; her tremors disappeared. She returned whole. Was this a miracle?  Or was it a clear case of misdiagnosis?

MS is a slippery disease.  It can only be diagnosed by eliminating all other possible causes. Due to AJ’s family history, a diagnosis of MS seemed like the obvious answer. It was only because of AJ’s daughter who was determined to dig deeper that her mother’s life was spared.

What I find most frightening about this matter is the frequency of patients who are routinely misdiagnosed. A 2013 AJMA study found that more than 1 in 5 patients will receive at least one misdiagnosis in a lifetime. In addition, between $17- 29 billion dollars are spent each year on unnecessary or inaccurate patient care. How can you avoid a misdiagnosis?

Here are 6 suggestions inspired by the Chief Strategy Officer of “Best Doctors, Inc.” a global health company founded by Harvard Medical School Professors that could help you or a loved one from becoming an unlucky statistic…

  1. Don’t be shy. Be curious and insistent. Ask things like “What else could this be?” Keep asking questions until you’re 100% satisfied with the answers.
  2. Get a second, third or fourth opinion if necessary. Let each doctor tell you what s/he thinks without being influenced by previous opinions.  Each time you visit a new doctor, come in with a list of symptoms so nothing is overlooked.
  3. Know your family medical history and share it with your physicians.
  4. Don’t assume your family history is your history as well.
  5. Find an advocate who accompanies you on doctor visits. It’s difficult to listen to and remember unpleasant medical news. Having someone who takes notes and can think clearly is a big help in keeping the facts and your options straight.
  6. If you had a biopsy or other test and your diagnosis is based on one report, have it checked more than once. Pathology is incorrectly interpreted more often than commonly thought.

Have you ever been misdiagnosed? How was the problem solved?

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