“Of course not!” I answered slowly. “I didn’t do anything. I just woke up and couldn’t talk.” But my mind was chattering faster than ever. “What if it’s a brain tumor? Did I have a stroke? But I’m only 32!” Tests did nothing to allay my fears. Doctors appeared to be stumped by my symptoms. “Possible multiple sclerosis,” said a neurologist, who later ruled it out. “Have you traveled recently to a foreign country?” asked an infectious diseases doctor. When results from both a spinal tap and a brain biopsy came back as inconclusive, I was afraid I’d never find out what was wrong with me.
Finally An Answer
As time went on, I became more alarmed. Though my speech was slowly returning to normal, I was having other scary symptoms. Occasionally, my body would freeze up, and I would be unable to move for several seconds, usually at stressful moments such as crossing the street. In desperation, I mailed my biopsy results to a university laboratory that I found through some Internet sleuthing. The results of my second opinion came back: a demyelinating disease, probably MS. Still, it took three neurologists, more symptoms, and another year to confirm that diagnosis. Like most people, I thought that doctors had all the answers. Most of the time, they make a quick diagnosis and prescribe medication or therapy, and the healing can begin. But as I learned, a quick diagnosis is not a given, and doctors can be as stumped by your symptoms as you are. Whether your symptoms are caused by a rare disease or a common illness with uncommon symptoms, here’s how to take control of a scary situation and get the answers you need. [pagebreak]
Find a Doc Who’ll Take the Time
These days, doctor visits seem to be run on the assembly-line paradigm, so you may be dealing with an overworked, time-deprived physician who barely knows you and who has to check your chart to find out if you’re the headache at 2:00 or the nausea at 2:15. Your symptoms might wind up like puzzle pieces that are never put together. That’s apparently what happened to Marc Wasserman, 38, a New York City public relations executive, who was visiting his primary care physician at least once a month complaining of severe fatigue and a general malaise that he just couldn’t shake. (Tired all the time? Here are 9 ways to fight fatigue.) His doctor tested him for the Epstein-Barr virus, but the test came back negative. When Wasserman complained of numbness in his hands and feet, his doctor sent him to a neurologist to be evaluated for MS. Again, tests were negative. It wasn’t until Wasserman met with an ophthalmologist for some vision problems that he got closer to a diagnosis. He spent an hour with the ophthalmologist, relating all his symptoms, all of which—tiredness, malaise, numbness in the extremities, and vision problems—are common signs of diabetes. The doctor advised Wasserman to have his blood sugar tested right away. When the results came back, Wasserman learned that he had dangerously high blood sugar and needed to start treatment for type 2 diabetes immediately. “I was very upset that my primary care doctor didn’t put the pieces together,” says Wasserman. “I think it was partly because of the time pressures she’s under to spend only a few minutes with patients.” Now he goes exclusively to what he calls old-fashioned doctors, found through referrals and word-of-mouth, who set aside 45 minutes to an hour for office visits and really listen to his health concerns. Often, he pays more for going out of his insurance network. But if you can afford it, the added expense is worth it, Wasserman says. “I’ve learned not to put a price on my health.” But before you shop for a doctor, try being a little more assertive with your current physician. Frank Boehm, MD, director of the maternal/fetal medicine division at Vanderbilt University Medical School in Nashville, says that patients need to speak up if they think their doctor is rushing through the office visit or not listening to their needs. “I always instruct my patients to say, ‘Doctor, can you slow down and go over that again? I’m worried. I’m nervous. I don’t understand what I have.’ This opens lines of communication and allows the patient to know better whether that doctor is right for them,” he says. [pagebreak]
Keep It Focused
You can help your doctor with his diagnosis if you present all the puzzle pieces yourself. To do that, you need to get organized before your visit, advises Patti Kane-Carlsen, a clinical information specialist for the National Organization for Rare Disorders. Here’s what to do: Make lists. Your first list should be your symptoms, starting with new ones, including when they started, what aggravates them, and which ones bother you most. Second, write down all the medications you’re taking, including prescription and over-the-counter drugs, vitamins, and herbal supplements. (Be sure to keep a copy for yourself.) Your doctor needs that information to rule out medication as the cause of your problems. Finally, write down your most urgent questions, and bring them to the doctor’s office. That shows your doctor that your questions are important to you. Why make lists? The act of writing requires you to sit down, get organized, and really think about everything that’s going on with your health. List making also frees up precious discussion time with your doctor, says Kane-Carlsen. Have all your health records handy. It will help your doctor understand what’s going on with you if you have your complete health history in one place, especially if you’ve already seen a number of physicians and had lots of tests. This information belongs to you and should be made available upon request. Focus on what’s important. When you finally meet with your doctor, keep the conversation focused on your main concerns and most recent or bothersome symptoms, says Mark H. Swartz, MD, professor of medicine and medical education at The Mount Sinai Hospital in New York City and author of Textbook of Physical Diagnosis: History and Examination. “Too often, patients come in with a long list of things they want to discuss, and it’s very difficult to know what’s really going on,” says Swartz. It’s okay to tell your doctor that many things are bothering you, but emphasize which one is most in need of immediate attention.
Go Sleuthing
Looking back, Wasserman wishes that he’d sought a second opinion from another primary care doctor instead of blindly trusting his own. “It didn’t occur to me to get a second opinion,” he says. “But the experience has taught me that it’s important to question your doctors.” Second opinions are extremely valuable because no physician is infallible, explains Jerome Groopman, MD, Recanati Professor of Medicine at Harvard Medical School and author of Second Opinions: Stories of Intuition and Choice in the Changing World of Medicine. “Everyone, during the course of his career as a physician, will miss a diagnosis, or make the wrong diagnosis, or recommend a therapy that may not be optimal. We’re all human and have our limitations.” A second or even third opinion becomes essential when the diagnosis is unclear or unknown or when someone faces a serious or life-threatening illness, according to Groopman. Finding the right doctor for the second opinion may be difficult. Your best bet may be a doctor affiliated with a teaching or university-based hospital, which is often on the cutting edge of new therapies. You want to find a doctor who can offer you a fresh perspective, who can look at your symptoms or illness and suggest a different diagnosis or treatment options. When you make the appointment, find out if you should bring copies of your records with you or send them on ahead so that the doctor has a chance to review them. You may need to travel to a top hospital or see a doctor who specializes in your problem. [pagebreak]
Hit the Internet
For better and for worse, the Internet has opened up a whole new world of health information that’s often too tempting to ignore. But you should proceed with caution, keeping in mind that many diseases share the same symptoms. And you should always limit your search to reputable Web sites, including those sponsored by universities (.edu), health care organizations (.org), and the federal government (.gov). Remember, you can’t always believe everything you read on the Internet, especially when the source is trying to sell you products or services. Finally, always verify information by finding at least one other reputable source that provides similar information, says Paul J. Krupin, author of Magic Search Words: Health, a book of Internet search strategies. Krupin’s Web site helps you select the right search words and use the best search engines to improve your results. How to Get the Best Search
Try the “minus dot.com trick,” says Krupin. Add a minus sign and the word “.com” to your search to eliminate commercial sites, which are more likely to contain inaccurate information. For example, if you go to the google.com search engine, and type “health -.com,” the number of responses falls from 101 million to 6.4 million.To dramatically narrow your search for information, type in a subject, action word, and one or two descriptive words.For example, if you’re interested in learning more about the diagnosis of breast cancer, type “breast cancer” (subject), diagnosis (action word), “patient education” (descriptive words), and -.com. Use quotation marks around words when you’re seeking an exact phrase.
If you use chat rooms, make sure they’re run by reputable organizations and monitored by professionals. Unsupervised ones can be risky because you have no way to verify the accuracy of information.
Network
Talk to friends, family, and colleagues about your symptoms. You never know when someone will have an uncle or aunt or sister or friend with similar symptoms. It may provide you with many dead ends, but it may point you in the right direction, says Kathy HoganBruen, senior director of prevention at the National Mental Health Association in Alexandria, VA.[pagebreak] For example, if you’re interested in learning more about the diagnosis of breast cancer, type “breast cancer” (subject), diagnosis (action word), “patient education” (descriptive words), and -.com. Use quotation marks around words when you’re seeking an exact phrase.
Shake the Family Tree
Many diseases are hereditary, so it’s important to let your doctor know about any illnesses of your parents, siblings, children, grandparents, aunts, uncles, and cousins. When you’re filling out your health history, don’t forget to include autoimmune diseases, says Virginia Ladd, president of the American Autoimmune Related Diseases Association in Detroit. Autoimmune diseases, which affect an estimated 50 million Americans, are especially difficult to diagnose. They typically don’t show up in routine blood tests and often have seemingly unrelated symptoms that come and go and point to different diseases. And they’re often strongly related to family history. Your biggest obstacle to getting a diagnosis is that doctors don’t often ask about them.
Trust Your Gut
Kathleen Speegle, 41, had always passed her physical fitness tests for the navy with flying colors. But in the mid-1990s, she began having trouble breathing during light exercise. After an x-ray and physical exam, she was diagnosed with exercise-induced asthma, given an inhaler, and sent home. But her breathing didn’t improve. A few years later, she developed a tumor in her abdomen. At that time, she was erroneously diagnosed with emphysemaas well. But Speegle, who hadn’t smoked in a decade, knew it was wrong. After a recovery from surgery to remove the tumor, Speegle could no longer run 100 yards. That’s when she finally demanded a pulmonary function test to check her oxygen levels—a simple test that no physician had ever prescribed, despite her history of breathing problems. When results came back showing moderate to severe obstruction, her doctor questioned the equipment’s accuracy. But she was referred to a pulmonary clinic, where she learned she had a rare and often fatal lung disease, lymphangioleiomyomatosis. “I was devastated but relieved that somebody finally believed me,” she says. Patients may feel uneasy challenging doctors, but sometimes it’s the only option, says Groopman. It’s perfectly appropriate to ask the doctor how certain he is about the diagnosis, what the supporting evidence is for it, what else it could be, and why he does or doesn’t feel certain tests would be helpful. Be calm and assertive. And believe in yourself, adds Speegle. “Listen to your body, and listen to that little voice inside your head that’s telling you there’s something wrong.” More from Prevention: How To Get A Second Opinion
