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.
Resources
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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