What To Do If You Can’t Get a Diagnosis

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At one point or another, we’ve all asked ourselves, “What’s wrong with me?” For some of us, the answer is given to us easily from our doctor. We may have a temporary illness or a condition that is easily diagnosed. However, for others, the answer isn’t so simple, such as chronic conditions and mystery syndrome. Finding out what’s wrong can feel like an unsolvable problem without any real solutions, especially if you have a rare or unknown condition.

Common Reasons

There is nothing more frustrating or discouraging for a patient than experiencing a set of symptoms and not being able to receive a clear diagnosis. A misdiagnosis can happen when a doctor diagnoses a patient with an illness, disease, or condition that later turns out to be incorrect. In this situation, the patient may be given treatment that is ineffective, or might even exacerbate current symptoms.

Sometimes, the doctor cannot give you a diagnosis. This usually means the patient does not receive any treatment. A doctor may give a patient a clean bill of health while the patient is actually suffering from a disease or other medical condition that continues to worsen.

One study conducted in a high-income country found that approximately five percent of adults experience diagnostic errors in outpatient settings each year. Over half of these errors had the potential for severe harm. The researchers suggested that this was likely an underestimate, and the rate of diagnostic errors in low-income countries may be even higher.

Sometimes, a set of symptoms cannot be diagnosed by a physician. Common reasons for this include:

• Symptoms are vague or difficult to identify.
• Multiple health conditions complicate the diagnosis, as individual symptoms may be caused by separate health issues.
• Some conditions do not have definitive tests for identification.
• Some conditions are so rare that doctors may have no experience with them.
• A new condition may not yet have been discovered or named.

Diagnosis

A “wastebasket” diagnosis is when a practitioner assumes that the patient is not actually experiencing symptoms or that they are exaggerating. This can result in a patient not receiving proper treatment, or any treatment at all. 

If your physician is unable to make a diagnosis, or if you believe you have been misdiagnosed, seeking a second opinion may be necessary. Despite significant medical advancements, there is still much that is unknown about the human body. All doctors take different approaches in their diagnoses, and treatment plans. As a result, conclusions and recommendations can vary significantly between physicians.

Second opinions can help determine whether the current treatment plan is the best option or if better alternatives exist. Specialists who focus on specific body systems tend to have more expertise and knowledge about certain conditions, which is especially important when dealing with rare diseases.

When searching for a specialist, it is helpful to ask questions such as:

• What type of specialist is needed?
• What specialists are available in your area or outside of it?
• What is the specialist’s background and approach to treatment?
• What are their credentials?

Keeping a Patient Journal

Keeping a patient journal or diary can be an effective way to track health details such as:

• Medical history
• Symptoms and their progression
• Diagnosis and test results
• Medications and treatments
• Diet and exercise
• Overall timeline of care

Web-based and mobile applications are also available to help patients maintain a digital health history. A patient diary can provide a record of appointments, test results, treatments, and any side effects experienced.

Peer Support

Another way to improve your chances of finding answers to health concerns is through peer support. Many online resources are available to connect people with others experiencing similar symptoms and conditions. Participating in forums, social media groups, health communities, and support groups can be an effective way to meet people facing similar challenges. Engaging with the right communities and asking the right questions can help shed light on your situation and bring you one step closer to finding answers.

Conclusion

When a physician acknowledges that they do not know what is wrong, it is not the end of the road—it is the beginning of the journey toward finding answers. Missed and misdiagnosed conditions are not uncommon, and searching multiple medical opinions is not a hopeless endeavour. Seeking a second opinion is an important step in becoming an empowered patient and understanding all available options.

For more videos and resources like this, check out our Learning Academy.

Written by Emily Linehan.

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