Without going into great detail, I have mounting and distressing neurologic symptoms. I first went to a local Board-Certified neurologist. He said "Your problem is not neurological. You're fishing in the wrong pond." He suggested "anxiety.”
I then went to a Movement Disorder Center of Excellence. After a 90-minute exam, I was told "You definitely DO have Parkinson's". When I told the Don't-have-PD neurologist he told me he doesn't want to see me again for 2 years.
I am longing for the FDA to approve a test for Parkinson’s to lay everyone’s doubts to rest. What do I do in the meantime?
Hello D, you have run into an unfortunately common occurrence in many people’s disease journey. This occurrence is common enough to have its own name: the diagnostic odyssey.
The diagnostic odyssey starts with your first symptom and ends with a correct diagnosis. In the best-case scenario, the odyssey is very short. You tell your doctor your symptoms and he or she tells you your diagnosis, possibly confirming it with a scan or blood test. In the worst-case scenario, the odyssey goes on for years and possibly never lands on a satisfying diagnosis.
Although diagnostic odysseys are expected with very rare diseases, people can go for years before they come to the correct diagnosis of even common illnesses like Parkinson’s disease, breast cancer, and depression. Many factors can contribute to these delays in diagnosis including gender, race, age, unusual or multiple presenting symptoms, presence of psychiatric symptoms (doctors are more likely to jump to other symptoms being “all in your head”), and system factors such as short appointment times and lack of insurance or lower socioeconomic status. Time itself can be a factor, in that many illnesses start with subtle and nonspecific symptoms that may become more obvious and specific over time.
Less talked about in the medical literature, and more discussed on malpractice attorney websites, are clinician factors which can include poor communication/listening skills, misinterpretation of test results, errors, or oversights. I would also add that many doctors are beholden to the code of arrogance, and are more likely to try to fit your symptoms to what they know (even if it is not a good fit) than to say “I don’t know.” Frustratingly, this can often include ignoring the patient’s and family’s observations and insights that may prove critical in reaching the correct diagnosis in a timely fashion.
So what do you do if you are in the middle of a diagnostic odyssey or have been given a diagnosis that you don’t trust? Before going into specific suggestions, I would say that the overarching theme is to be prepared to advocate for yourself. You can be civilized and assertive in letting your healthcare provider know that it is imperative for you to understand your diagnosis. Other tips that may be helpful include:
1. Come prepared for your doctor visits: Go over your medical history to make sure you can quickly and accurately summarize the key facts (e.g. when symptoms started, what medications you tried that didn’t work). Also, write down any key questions or concerns that you have and let your doctor know about these at the start of the visit (e.g. my biggest concern today is to try to get a more specific diagnosis).
2. Ask questions: Part of being prepared is being prepared to dig deeper into the information you are given. In the book Attending, Dr. Ron Epstein encourages patients to help their doctors think more broadly by asking questions like “How sure are you that this is the diagnosis", “Is there anything else this could be?” or “Are there tests or other things we can do to either rule out some of these other possibilities or rule in your leading diagnosis?”. Another key question for yourself is, did this doctor listen fully to me and my story? If not, they might be missing key parts of your history or exam that could lead to the right diagnosis.
3. Get more specific tests (if available): For some conditions, there are tests that can help diagnose specific diseases. As an example, MRI scans and spinal fluid analyses can help confirm or rule out a diagnosis of multiple sclerosis. Unfortunately, many conditions, Parkinson’s being one of them, don’t have great options for testing. If and when new tests become available, it may be worthwhile to pursue them. But it is also important to know what their limitations are. For example, some doctors will order a test called a DAT scan (dopamine transporter scan) for Parkinson’s disease. While most people with Parkinson’s have a positive DAT scan (reduced dopamine in the brain), it is possible for there to be false positives (people with other forms of Parkinsonism can also have lower dopamine) and false negatives (sometimes people with early Parkinson’s have a normal test). In this case, most experts don’t feel DAT scans add much to what they know from a good history or exam.
4. Get a second opinion: You have the right to get a second opinion. Don’t worry about your current doctor’s ego. If they’re a mature clinician, they’ll be happy to get more input.
5. Seek out care from experts: Sometimes you may want more than just a second opinion. This could include going to a subspecialist (a doctor with additional training in a particular area, e.g. a movement disorders specialist for Parkinson’s disease). In some cases, it may mean seeking out national or international experts in a specific condition or going to an institution like the Mayo Clinic or National Institutes of Health that provides coordinated efforts across multiple experts to uncover rare diagnoses.
6. Is your treatment plan working: Perhaps the most important sign that you are on the right track is that the treatments you are receiving are improving your condition or that the symptoms are progressing in a way that is expected. If not, it may be a good idea to re-explore whether you have the right diagnosis.