Saturday, January 13, 2018

Life with Chronic Conditions: When They Can’t Figure Out What’s Wrong

Several people I know have a multitude of symptoms but no diagnosis. While this may seem frightening and unusual to them, many people have symptoms that they’ve been tested for in numerous ways yielding no definitive answer. Yes it would be nice sometimes if life could be like the TV doctor who figures out the mysterious illness and finds an effective cure all in less than 60 minutes. But that’s not reality and the elusive search for a diagnosis and ultimate cure can be a problem in and of itself.

As one doctor wrote, while there are many ways you can feel miserable, there are a finite number of ways the heart stops working causing death. Mystery Diseases (Diagnosing the Undiagnosable) The plus side of an extensive work up that yields no diagnosis, it also rules out the ways you could be at risk for premature death. Symptoms can get worse, persist or even get better, but in the interim, you aren’t going to die from them. Watchful waiting can sometimes yield the best results.

Please note that this pertains to adults and not children who have been experiencing symptoms from birth.

While you are “watchful waiting” consider the following.

You don’t need a diagnosis to feel better. Keep in mind that just because they can’t name your disease, it doesn’t mean you can’t get help controlling symptoms.

Mindfulness-Based Stress Reduction: Study after study continues to show that MBSR helps those with chronic conditions as well as anxiety, pain etc. I had an opportunity to hear the founder of MBSR, Jon Kabat-Zinn speak several years ago at an academic hospital. He stated emphatically that docs should send patients that they didn’t know what to do with to an MBSR program since they were getting good results. While you can do MBSR on-line for free, it’s best to do it as part of a group.

See another doctor: Describe the symptoms and let the provider draw their own conclusion. Giving them another doctor’s diagnosis right off the bat can skew their thinking. Consider doctors of different specialties as well as those who are part of academic medical centers

Keep a personal health notebook/diary: Log symptoms and triggers as well as tests done, results, medications you’ve taken etc. Some on-line tools to help you get started.

Check your Meds: Whether it’s an over the counter medication, vitamin, supplement or a prescribed medication, side effects and interactions are very possible as well as having one of them mask symptoms that can help your doctor make a diagnosis. Be sure to let your provider know everything you’re taking, dosage and when you take them. 

Could it be Environmental? Talk to people in your neighborhood to see if they are having similar symptoms. If you travel and find that your symptoms disappear, this could an indication of an environmental issue as well as a reaction to a stressful home environment.


Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health Common Fund. The UDN is made up of clinical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases. Physicians and patients with additional questions may call 1-844-746-4836 (1-844-Ring-UDN).

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