When You Can't Get a Diagnosis

It's possible there is nothing more frustrating or upsetting to a patient or her doctor than a set of symptoms—and no name for what those symptoms mean. No name, no label for that set of symptoms means the patient is undiagnosed.

A doctor and a patient talking in the doctors office
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"Failure to diagnose" is the terminology used by doctors (and lawyers) to indicate a patient has a set of symptoms that have gone undiagnosed. It is considered one of the forms of misdiagnosis, or missed diagnosis. When that failure to diagnose leads to harm to the patient, there are legal ramifications. When the failure eventually leads to a diagnosis in time to treat the diagnosed illness or injury, it's considered merely a "delayed diagnosis."

Why Can't a Diagnosis Be Determined?

The science of medicine may be highly advanced, but that doesn't mean that it is always exact or perfect. There can be a lack of diagnosis due to these situations:

  • The symptoms themselves may be difficult to identify. An occasional headache may be just a headache, or it could be a symptom of a larger problem.
  • The body system causing the symptoms may not be clear, and the patient may find they are seeing the wrong specialist, leading to a delay in diagnosis.
  • The patient may have more than one medical problem which makes the diagnosis process confusing.
  • There may be conflicts among the drugs or supplements the patient already takes, leading to symptoms caused by those conflicts.
  • There are many diagnoses that do not have definitive tests used to determine them, or which can't be truly diagnosed until a patient has died (upon autopsy). In these cases, doctors must use combinations of symptoms, often vague symptoms, which can lead to a lack of diagnosis.
  • The real medical problem may be highly unusual or not appropriate to the age of the patient. The doctor might not consider a diagnosis that is very rare, or very rare for that age of the patient. For example, lung cancer in a younger person would be highly unusual.
  • There are thousands of rare diseases that are so rare, that few medical professionals know much about them.
  • The patient may not be entirely truthful about symptoms. A patient who claims he doesn't drink alcohol but has pain in the region of his liver, may not be immediately diagnosed with cirrhosis of the liver.
  • There may be no name that indicates one specific diagnosis. Medical science may not yet have determined a named diagnosis.

How Often Are Patients Undiagnosed?

Statistics on the frequency of missed diagnoses vary according to the symptoms or the eventual diagnosis. Some examples are:

  • Glaucoma: estimated 1.5 million patients in the US are undiagnosed
  • Sleep Apnea: estimated 23.5 million patients in the US are undiagnosed
  • Ovarian Cancer: because women can go for many months without symptoms, and because those symptoms are usually thought to be more like gastrointestinal related problems, it is not uncommon for these diagnoses to be missed.

These are examples only. A missed diagnosis can occur in almost any disease or condition.

Outcomes Resulting From Lack of Diagnosis

Things that can happen if your doctor can't reach a clear diagnosis include:

  • Your doctor may dismiss your illness, telling you it's "all in your head." Unless you know yourself to be a hypochondriac (so the "all in your head" could be accurate) then you'll want to change doctors to find one who will work with you respectfully.
  • Your doctor may make up a label for your illness; a name that isn't really an accepted name for a diagnosis. Professionals call these "fake" or "trash can" diagnosis. They seem to be made up in order to give the patient a label.
  • You may simply continue to get sicker or feel worse. Eventually, your symptoms may become pronounced enough so your problem can get diagnosed.
  • You may be treated for the symptoms which will provide some relief. You may find, however, that by relieving symptoms, you may be covering the aspects of your medical problem that could assist the diagnosis.

Regardless of the eventual outcome, the very lack of a label is frustrating and upsetting at the least, and frightening at the worst. Patients may go months or years without the label they need and that may lead to a lack of treatment. They may become further debilitated in the process. The practitioners involved will be frustrated, too.

For patients who are undiagnosed, it's important to remember that the doctor wants you to have a clear diagnosis, too, because that will be the best way to determine the right treatment.

Sometimes it may be just as useful to know what you don't have, which your doctor will more often be able to determine than to know exactly what is wrong with you.

If you have been undiagnosed for too long, and are frustrated because your doctor has not been able to confirm a specific diagnosis for you, you may want to review tactics for solving your undiagnosed disease or condition.

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Article Sources
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  2. National Center for Advancing Translational Sciences. Tips for the Undiagnosed. Updated April 24, 2019.

  3. Centers for Disease Control and Prevention. Know the Facts About Glaucoma. Reviewed December 6, 2018.

  4. American Academy of Sleep Medicine. Hidden Health Crisis Costing America Billions. 2016

  5. American Cancer Society. Can Ovarian Cancer Be Found Early? Revised April 11, 2018.