Marielle’s Medical Mystery: 11 Years To A Diagnosis

Patients with rare conditions can often wait months or years for a diagnosis. In the meantime, they suffer – wondering if their symptoms are real or in their head. Marielle Lejcher had severe abdominal pain for 11 years before she found one very good doctor who took the time to put all the puzzle pieces together and ordered the right test.

Key Takeaways:

• See a specialist. While you should generally start with your primary care physician, see a specialist if they aren't sure about your diagnosis or if your symptoms are getting worse despite treatment.
• Self-refer to a specialist (if your PCP doesn't want to refer you). Today, most health insurance plans don't require a referral. So if your PCP doesn't recommend seeing someone else, self-refer. And if that specialist doesn't arrive at a definitive diagnosis, make an appointment with a specialist with different expertise.
• Keep a journal. Write down the details about your symptoms. The details matter because a complex diagnosis is like a big puzzle, and the smallest detail can be the missing piece of information that helps the physician suspect an obscure condition.

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