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For three years, doctors couldn't figure out what was wrong with me. My pinkie finger pulsated, my cheek twitched, my left side felt weak, and I had a dull pain behind one eye. I was examined by 10 specialists and had three MRI scans and multiple blood tests, but still no answers. I spent my days making appointments and my nights surfing the Internet, trying to make my own diagnosis.
What was happening to me is all too common, even in this age of high-tech medical tests and screenings. According to a report in the Journal of the American Medical Association, at least 4 percent of patients who pass away while in the hospital might have survived had their diagnoses been accurate. The risk of error may be greatest for women, because some of the most notoriously difficult-to-diagnose conditions are autoimmune diseases, which affect three times as many women as men. "Women with autoimmune diseases wait an average of four years and see four doctors before they get a correct diagnosis," says Virginia Ladd, president and executive director of the American Autoimmune Related Diseases Association. "Worse yet, 45 percent of them are labeled chronic complainers."
So what can you do to make sure your medical case doesn't go unsolved? For starters, understand the process. To make a diagnosis, doctors consider three key things, explains Douglas Reifler, MD, associate professor of internal medicine at Northwestern University's Feinberg School of Medicine in Chicago. First, they review your medical history -- the information they get from your introductory visit, including medical conditions that run in your family, your own past health complaints, and your lifestyle (whether you smoke, drink, exercise, and so on). Second, they consider the symptoms that prompted you to make an appointment. Third, they factor in the results of your physical exam, lab work, scans, ultrasounds, and/or x-rays. The rest is as much an art as it is a science, and it's crucial that you take an active role. "There's a lot of teamwork in the diagnostic process, but ultimately you're the person most responsible for the success of your healthcare team," says Mehmet Oz, MD, professor and vice chairman of surgery at New York Presbyterian-Columbia University and coauthor of You: The Smart Patient.
Whether your symptoms have been bothering you for a few days, a few months, or even years, follow these seven easy steps to help your doctor make a speedy, accurate diagnosis.
...and bring it to every appointment. Note the problems that occur most frequently and cause the most discomfort, as well as your lifestyle habits. Are you exercising? Getting enough sleep? Stressed out at work? The journal will not only help you remember everything you need to discuss at the visit, but it will also help you and the doctor prioritize your problems, particularly if you're experiencing an odd assortment of issues that don't seem to be triggered by anything. When physicians look at your journal, they may see patterns that you don't, says Wendy Gammon, who runs the Standardized Patient Program at the University of Massachusetts Medical School in Worcester, a course that teaches future doctors how to better communicate with patients. I kept one, and after looking at it, my internist noticed that all of my symptoms seemed to appear during periods of increased stress and insufficient sleep, two factors that are known to trigger migraines.2. Don't hold back.
Tell the doctor everything -- even if you think it's insignificant. One study in the Annals of Internal Medicine found that an inadequate symptom history or inadequate physical exam was responsible for 42 percent of missed and delayed diagnoses. Often this information provides the pieces that complete the puzzle -- as was true in my case. At one of my appointments, I mentioned something I'd been too shy to bring up before: pressure on one side of my head and neck during sex, which is a telltale sign of a migraine.3. Scour your family history.
Many conditions have a genetic component and are linked to one another. For example, having a relative with an autoimmune disease can put you at an increased risk for developing one. Keep a list of your parents', grandparents', and siblings' medical issues. Do a short interview with each family member, and ask about their health concerns at the next gathering. If your family is anything like mine, they're griping anyway -- you're just going to write it down this time!4. Get a second opinion.
Research shows that this results in a new diagnosis or treatment in as many as 43 percent of cases. "I can't emphasize this enough: Getting a second opinion could save you a lot of trouble and suffering; it could save you," says Dr. Oz. Don't be deterred if the first doctor you see is dismissive. "If your symptoms came on when you were otherwise perfectly healthy, that's a sign to pursue it," says Ladd. "Have confidence that what you're experiencing is real."5. Keep all of your doctors in the loop.
Going to specialist after specialist, as I did at first, is probably not the best idea. It can slow down the process, because you're starting from zero with each new doctor's appointment. If you're seeing multiple physicians, make sure they all know the whole story by bringing copies of your records to every visit, says George Griffing, MD, a professor of medicine at Saint Louis University School of Medicine.6. Know when to stop worrying.
Work with your doctor to determine when you've explored all of your options, says Dr. Griffing. For me, that meant having all of the tests I possibly could to make sure I didn't have multiple sclerosis like my mother (she had just been diagnosed when my symptoms started) or heart trouble like my father (who died suddenly of heart failure at the age of 54). "You may have to say, 'I accept this for what it is,' even if your symptoms have no name," says Dr. Griffing. "We all have the notion that medical science is as advanced as it can possibly get, but there is a limit to what we know," adds Dana S. Simpler, MD, a general and internal medicine specialist in Baltimore. "Patients want a straight answer, but there are people who simply don't fall into a diagnostic category with a known cause and treatment."7. Seek out support.
"Not knowing the cause of troubling physical symptoms can make you depressed and anxious. Consulting a psychologist, psychiatrist, or other mental-health professional can help you cope with those feelings and give you the support you need to pursue finding an accurate diagnosis," says Margaret Backman, PhD, author of The Psychology of the Physically Ill Patient and a psychologist in private practice in New York City. A mental-health professional can teach you meditation and relaxation techniques that can take your mind off aches and pains. "Friends and family can get burdened if you talk about your problems all the time, so it's often good to have an outside party to talk things over with and help you put things in perspective," she explains.
To deal with the stress of my situation, I streamlined things and visited just one internist regularly. I kept a running list of all my concerns, brought those to appointments, and stopped obsessing over every ache and pain in between. My internist thought I might be experiencing a type of migraine headache in which you have the neurological symptoms without always having the actual head pain. Turns out her suspicion was right: She referred me to a specialist who officially diagnosed me as having migraines and prescribed a medication that finally made my maddening symptoms disappear.
What are the hardest diseases for physicians to diagnose? The experts we talked to mentioned the following four. All of them commonly hit women in their 20s and 30s.
Chronic Fatigue Syndrome (CFS) More than one million Americans -- about 80 percent of them women -- suffer from CFS. It's characterized by fatigue that won't go away, but other symptoms can include sore throat, muscle and joint pain, forgetfulness, insomnia, weakness, dry eyes and mouth, dizziness, skin sensations, and weight loss. Experts haven't identified a single cause, and no diagnostic tests are available. Because of this, doctors treat symptoms as they appear. For more info: www.cfids.org, the Web site of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America.
Fibromyalgia Chronic pain is the number-one warning sign of this disease, which affects up to 7 percent of Americans, most of them women. Sufferers often complain of all-over musculoskeletal discomfort. Other symptoms include fatigue, impaired coordination, insomnia, skin sensitivity and rashes, headaches, anxiety, and irritable bowel and bladder. As with CFS, the cause is unknown and there's no one "cure"; symptoms are treated as they occur. A patient is diagnosed with the condition if she has widespread pain for at least three months and tenderness or pain in at least 11 of 18 specified points in her body, including the inside of the knee joints and the crook of the elbow. For more info: www.fmaware.org, the Web site of the National Fibromyalgia Association.
Irritable Bowel Syndrome (IBS) Symptoms of IBS, which affects about 40 million women, include abdominal pain, bloating, gas, diarrhea, and constipation. No lab test can diagnose IBS, and a doctor must first rule out other gastrointestinal disorders. Treatment is usually a combination of stress management, fiber supplements, and medication. For more info: www.ibsassociation.org, the Web site of the Irritable Bowel Syndrome Association.
Scleroderma An autoimmune disease that causes the hardening and scarring of the skin and connective tissues, scleroderma may affect multiple organs and can cause kidney failure and pulmonary hypertension, which can lead to heart failure. It affects up to 100,000 people in the United States, and female patients outnumber males by about four to one. Doctors don't know what causes scleroderma, and the various complications of the disease are treated as they occur. For more info: www.scleroderma.org, the Web site of the Scleroderma Foundation.Is It All in Your Head?
If your doctor suggests that depression may be to blame for symptoms that don't respond to treatment, she's not dismissing your concerns. In fact, she may have cracked your case. According to the National Institutes of Mental Health, physical symptoms that don't respond to treatment, including headaches, digestive disorders, and chronic pain, can be warning signs of depression. "The mind-body connection is very real," says Margaret Backman, MD. As doctors now know, depression comes with physical symptoms such as stomach pain, fatigue, and insomnia. "It's the more enlightened medical professionals who refer people to a psychiatrist or psychologist," says Dr. Backman. "Getting treated for depression -- through therapy, antidepressants, or a combination of both -- often significantly improves a patient's symptoms."
Originally published in FITNESS magazine, February 2007.