6 Red Flags That You Might Have Been Misdiagnosed

You have seen your doctor or health care provider and described your symptoms to the best of your ability. You may have even brought the results of prior diagnostic tests, lab work, x-rays, or summaries from other visits to doctors or other clinicians. You may leave the office with a diagnosis that is presented as certain — no questions asked. If you have seen other health care providers, you may receive a diagnosis that confirms what others have given you or one that may be different altogether. You may be told that there is no identifiable diagnosis at all. You may be told that although you have a diagnosis ​—that it is "idiopathic" — medical jargon for "of unknown cause."


Your Intuition Tells You Something Is Wrong

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You may also leave the office with something else, however: a gut feeling that something is just not right. Things just don't add up. The information you have been given seems inconsistent and confusing.  You are not confident that your symptoms have been considered carefully enough. Millions of Americans receive the wrong medical diagnosis each year. Although anxiety is a common response to receiving a medical diagnosis — especially a serious one — don't write off that "gut feeling" to anxiety alone. Intuition is a powerful way of knowing when something is just not right. Follow it. It is part of the powerful survival instinct that each of us has. Don't dismiss it. It can save your life.


Your Doctor Won't Listen to You

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Part of the reason you may feel that "gut instinct" that something is just not right, or suspect that you have been given an incorrect diagnosis, is that you do not feel that your doctor is really listening.

"My doctor is just not listening to me" is an all-too-common complaint. Although this certainly does not make for the best communication between yourself and your doctor, it does not necessarily mean that you have been given a wrong diagnosis — but then again, it may. 

No two patients experience symptoms or illness the same way, nor do they describe it in the same way. Doctors are trained to identify patterns, categories, or typical features in your health history, and to collect diagnostic information suggested by what they hear. The problem is that they may "hear" what you are saying, but they may not "listen" to it. If what you are reporting does not fit into a category, symptom pattern, or typical clinical presentation, your concerns may be discounted. Doctors are under more pressure than ever — ​to make clinical decisions in less time than ever. Even the most compassionate and skilled diagnostician can make an unintentional error with insufficient time or limited information.

Sir William Osler, one of the four founding physicians of Johns Hopkins Hospital and considered to be "The Father of Modern Medicine" — has been credited with saying, “Listen to your patient, he is telling you the diagnosis.” Offer your doctor information about your symptoms that is concise, to the point, and honest. Know and share your medical and family history. Provide accurate information about all of your prescription and non-prescription medications. You have a responsibility to be as thorough as you possibly can in providing information to your doctor. Then, it is your doctor's responsibility to listen. If you don't feel that is happening, speak up.


A Search for Information Suggests a Different Diagnosis

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That "gut feeling" leads you to search for information that is at your smart-phone or search engine fingertips. You may not be a healthcare professional and need guidance in interpreting the overwhelming amount of information obtained from an appointment with​ "Dr. Google" — but you find information that supports that feeling that something is "just not right." Perhaps a different diagnosis can — or should — be considered. You are not a doctor, but you can be an informed health care consumer, who has the most at stake: your own health — or maybe even your life. 

Take careful steps to make sure your internet sources are credible, reference original research, and that the information may be found in more than one, authoritative reference. ​Try coming up with some alternate explanations about what might be wrong, or about what might be contributing to your symptoms — that seem to make sense based on your research. Make a careful list of all of your sources, and better yet — make copies of them and bring them with you to your next doctor's appointment. You may find information that suggests more than one diagnosis. Sometimes the diagnosis you have been given may be the correct one, but it may not be the only one. Discuss the information you have found with your health care provider. Your doctor is the medical expert, but you are the best expert on you. The right diagnosis is the result of a team effort between your doctor and you. The best health care decisions result from collaboration — not competition.


Pills, Pills, Pills

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An often overlooked area in seeking a diagnosis —or confirming one— is "pills, pills, pills." In truth, this is often a good first place to look when symptoms just don't add up or are new or confusing. And if the response to the concerns and symptoms that you have reported to your doctor results in you being placed on more and more "pills, pills, pills"— and you leave your doctor's office with more prescriptions than answers — consider this a major red flag. 

Although the medications you are given may be clinically indicated, the more of them you are on, the more confusing making an accurate diagnosis can become. The more medications you are placed on, the more drug interactions and side effects— expected or unexpected — are likely to occur. Also, as patients become older, kidney and liver function also decline, making it harder for your system to process the drug and remove the medication from your system. This may cause the medication to stay in your system longer, leading to increased side effects, and even toxic levels of a drug. Read those patient education pamphlets you get with your medications carefully! They often contain clues to side effects that may account for your symptoms. Call your pharmacist. Your pharmacist is an expert resource for drug interactions, side effects, and medication actions — and is often very willing to answer your questions about your medication. In many pharmacies, you can walk right in and ask for a consultation. In addition, your pharmacist may have access to not only the prescriptions you have gotten filled (especially if you get your medications filled at the same pharmacy or the same group of pharmacies that have a centralized system of electronic medication records) but can also access a large database of drug actions, interactions, and side effects that just might solve some puzzles.


You Are Not Getting Better

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You are following your prescribed medical regime, talking your medications as prescribed, sticking to dietary and activity guidelines as best you can, and taking other measures suggested by your doctor. There's just one problem: you're not getting better. ​If the treatment plan you are following is based on a diagnosis that is incorrect, this just might be the reason your symptoms are not responding to treatment. Was your diagnosis based on just one test, or was more than one test done to confirm it? Were any of your lab tests repeated when found to be abnormal? By another lab? Was your diagnosis based on information from a test you received in the past, that may not reflect outdated information about your current health? Are you sure that the lab results you have received are actually yours? Have you found any mistakes, discrepancies, or incomplete information in your medical record? Is it unclear to you how your doctor arrived at the diagnosis you were given, especially if your symptoms may be linked to another diagnosis? Does your own research reveal that there may be another ​—or better —diagnostic match for your symptoms? Have you asked your doctor one, simple question: "Could this be something else?" These 5 simple words might just be enough to find out why you are not getting better.


Attempts to Talk to Your Doctor Again Are Discouraging

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Try to re-open a dialogue with your doctor about your concerns, and share the information you have found in your own research. Many patients fear being labeled as "difficult" or as "problem patients" and as a result, become passive or defer to the doctor's opinions or decisions.  Although this may help patients to feel safe, it certainly does not help open communication, or get to the bottom of your diagnostic concerns.

Many patients still view doctors as the "authority figure" rather than their partner in healing. The first does not promote collaboration, the second does. Present your concerns to your doctor in a respectful way, with a collaborative tone. Your doctor is your advocate, not your adversary.  The best clinicians I know will value the motivation you are demonstrating to participate in your own care, the time you have put into your research, and they will respect your concerns by listening. If you are dismissed — or feel discounted for gathering information about your own health —find another health care provider. Run, do not walk.

A compassionate and wise doctor will consider your thoughts and concerns to be valuable assets in making the correct diagnosis, and be willing to listen carefully. Seeking a second or third opinion, or as many as you want or need, can often make an important difference not only in confirming the correct diagnosis but in finding a doctor you can build a trusting relationship with. ​Multiple opinions are most important if the diagnosis is a serious one, or if invasive or urgent treatment is advised —like surgery. There are many strong clinicians available who encourage rather than discourage patient involvement. Find one. Your life could depend on it.

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