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In Limbo: Waiting for a diagnosis can be unsettling. Ask your doctor these five questions to help ease the anxiety.

Kritz, Fran

doi: 10.1097/01.NNN.0000522198.29248.de
Departments: The Waiting Room

Ask Your Doctor: What your doctor can do to ease the anxiety of an uncertain diagnosis.

We like to say that neurology is slow medicine,” says Arielle Kurzweil, MD, a neurologist at the NYU Langone Medical Center in New York City. “Even though you're going to a specialist, we may not have the answer immediately,” she says. “We usually have to order tests.” Your doctor may also say he or she is going to monitor you—see you every few months for a year to see if your symptoms become more clear and definitive over time.

Many neurologic conditions can be hard to pin down, says Kevin D. Weber, MD, a neurologist at the Ohio State University Wexner Medical Center's Neurological Institute in Columbus. Symptoms such as a headache or changes in walking or strength, for example, can be caused by any number of conditions, and each may have to be considered.

“Sometimes the symptom pattern is very clear, but sometimes it's not,” says Mariel Deutsch, MD, assistant professor of neurology at the Mount Sinai School of Medicine in New York City. “And sometimes, even after we do all those tests, there's still a lot of uncertainty.”

That period of uncertainty can be stressful and upsetting for patients—but your doctor can help you reduce the discomfort. Here are five questions to ask to manage your worries.

ISTOCK/KUPICOO

ISTOCK/KUPICOO

1. WHAT TESTS DO YOU PLAN TO ORDER? Your neurologist should be able to communicate why she is ordering a particular test and what she might be looking for, says Dr. Kurzweil. If your neurologist doesn't explain, be sure to ask, says Dr. Weber. And always answer the doctor's questions about family history and prior symptoms, as that may add important information to the puzzle, says Jack Burks, MD, FAAN, a neurologist and chief medical consultant for the Multiple Sclerosis Association of America in Cherry Hill, NJ.

2. WHAT CAN I DO TO REDUCE STRESS WHILE I WAIT? You can dissipate stress by talking to your doctor about your specific worries and fears, says Dr. Weber. If you already have a diagnosis, find a support group where you can discuss your concerns and fears openly. But don't act on any medical advice you may hear until you check with your doctor. Try to distract yourself with fun activities; sitting in the house worrying about symptoms will not help ease the stress.

3. HOW QUICKLY CAN I LEARN MY TEST RESULTS? Some neurology practices give patients access to their records through an online portal, says Dr. Kurzweil. You can discuss that option with your doctor if you don't want to wait for a call. A better idea may be to check the file to see if tests are in, then call the doctor to see when he is available to discuss the results.

4. WHEN SHOULD I FOLLOW UP? Your doctor will likely ask you to follow up in a few months or a year, or perhaps every year, to see if symptoms resolve or progress, says Dr. Kurzweil. Don't skip those appointments, even if they make you anxious. They allow the doctor to intervene if testing or treatment is needed. And if you notice any changes or new symptoms between appointments, call your doctor, says Barry Jordan, MD, MPH, assistant medical director at Burke Rehabilitation Hospital in White Plains, NY.

5. SHOULD I KEEP CONSIDERING MORE TESTS WITH THE HOPE OF DIAGNOSIS? There are pitfalls to ordering tests that are not indicated, says Dr. Weber. For starters, many tests are expensive, and insurance generally doesn't cover unnecessary tests or tests that are unlikely to yield a diagnosis, such as a repeat MRI without a change in symptoms or exam findings. Ask your neurologist for advice, and always follow up immediately if your symptoms change or worsen.

© 2017 American Academy of Neurology