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When Houman Danesh, M.D., director of Integrative Pain Management at The Mount Sinai Hospital in New York, had a patient come to him for a second opinion regarding a pinched spinal nerve that had no relief from regular epidural injections, his examination revealed a sizable herniated disc and asymmetry in her hips. After urging the patient and her insurance company that a second MRI was necessary, he was able to discover a benign tumor. This patient was lucky, as her story could have gone a different way.
A 2000 study published in the Mayo Clinic Proceedings found that roughly 26 percent of patients who had an autopsy after dying in an intensive care unit were misdiagnosed (or the illness was missed altogether). That's one in four people who could have had a different ending to their stories. Even though these numbers paint a grim picture, there are ways for patients to improve chances of an accurate diagnosis.
Do your prep work
The first step in getting a proper diagnosis is to be aware of your symptoms. "Writing them down can be helpful. Others find it useful to talk to a friend first to get the details straight," says Dr. Danesh.
The doctor should ask thorough questions but the patient needs to be honest and not withhold information, even if it's embarrassing or hard to talk about. Know your – and your family's – medical history and bring in any medications you are taking, even if you think they are unrelated. If the doctor doesn't have all the information, the likelihood of a misdiagnosis increases. "Making a diagnosis requires the patient's full participation, even if it is simply in providing an accurate, thorough history," says Scott Fields, M.D., of the Oregon Health and Science University in Portland, OR.
Don't be shy: Whether it's voicing concerns or mentioning tests you've read about or asking about drug interactions, patients need to speak up. It's ok to do your own homework, just don't get too caught up in self-diagnosing online before your appointment, says Dr. Danesh. "It is like a novice searching the Internet for something wrong with their TV and trying to repair it. Except that the human body is much more complicated than a TV."
Make sure you are comfortable with the diagnosis
After a diagnosis and subsequent prescription (whether it's medical or something else), the patient should monitor progress. If the condition doesn't change or worsens, then a red flag should pop up. Also, patients need to trust their gut – if that nagging voice in your head that tells you something is wrong won't go away, don't ignore it. It's time to schedule a follow-up appointment. "If you are uncomfortable with the diagnosis, then sharing that with your physician is important," says Dr. Fields. "And just keep asking questions. If you don't have a good relationship with your doctor, it may be appropriate to find a new one; but if you do have a good relationship, then asking questions is part of the partnership that must exist."
If there's a test you think you should have, find out why you aren't getting it. It may be a question of your insurance company not wanting to foot the bill, which was the case with Dr. Danesh's patient. He had to spend half an hour on the phone with her insurance company to get the MRI approved. Doctors should be open to delving deeper to find out what is wrong, rather than guessing or mistreating.
If you still don't feel like progress is being made, be open about getting a second opinion: "Patients can simply say, 'I value your judgment and efforts, however I am curious to see what another vantage point would be for my conditions'," says Dr. Danesh.
Find the right second opinion
When seeking a second opinion, consider a practitioner in a different field. A nutritionist could pinpoint a food triggering depression or might recognize celiac disease or other digestive disorder more readily than a general practitioner. Dr. Danesh recommends telling the new provider about your symptoms but not necessarily mentioning what the previous diagnosis was: "This can lead the doctor to make the same diagnosis. After the doctor has questioned and examined you, you may choose to tell him or her what the initial doctor thought and then get the second doctor's opinion on the diagnosis." If the second practitioner offers a different diagnosis, you can then go back to your original doctor with it to see what he or she thinks. "I welcome patients to get other opinions and view that as help from colleagues who have a different vantage point," says Dr. Danesh.
The bottom line is, even if it takes visiting six different doctors to get a proper diagnosis, it's important to trust your instinct and persist with finding out what's wrong rather than ending up another statistic with a story of misdiagnosis to tell. Being a prepared patient and creating a solid, honest relationship with your doctor will hopefully aid in getting to the bottom of what's ailing you.