Getting a Correct Mystery MEDICAL Diagnosis

There is a process that most physicians follow in making a diagnosis, and the process depends on the initial impression of whether rapid diagnosis (medical emergency) is needed or not. So, the physician makes a "presumptive diagnosis". I am concerned that academic reviews (such as, Is Misdiagnosis Inevitable?) suggesting vast numbers of errors in dianosis are lumping in the not-finally-refined presumptive diuagnosis as if it were a concusive or final diagnosis.

Each of us must make personal decisions as to WHEN to seek medical care. Many of us yearn for ways to help the "system" help us by getting to a correct diagnosis through our own self help or self participation toward a timely, correct diagnosis. With that in mind, Wikipedia has an evolving page on Self Diagnosis. This process may include a person applying to get into a mystery diagnosis process at a referal center or with an expert diagnostician or by checking some of the diseases in the TV programs to see how the process works to get to a correct diagnosis.

1. TV Programs:
   • Discovery Life Channel's "DiagnoseMe" series:
     This TV series (HERE) has cases...usually two per episode...which nearly drive patients and families crazy and patients nearly to suicide as the lengthy diagnostic process slowly unfolds as the series of dozens of doctors attempt diagnosis amidst the brief encounter times with patients. There are other programs. If you put DiagnoseMe into the search engin of Wikipedia, you can find a few of the diagnosed rare diseases they showed.
   • Mystery Diagnosis (2005-2011), Opray Winfrey Network.
   • Forensic Files & episode list and summary.
     
     
2. Here are sources claiming to focus on diagnosing extremely challenging cases:
   • CrowdMed, HERE.
   • NIH Undiagnosed Diseases Program, HERE.
   • The NIH Undiagnosed Diseases Network, HERE.
   • Mayo Clinic Rochester MN, HERE.
   • Johns Hopkins Remote Second Opinion Plan, HERE.
   • Cleveland Clinic, HERE.
   • UAB Undiagnosed Diseases Program, HERE.
   • Dr. Bolte, Medical Mystery consultations, HERE.
     
     
3. Comments: You can web search for "mystery diagnosis", "difficult diagnosis", rare _[stomach pain, dizziness; breathing; fever; headache]__ syndromes; or other topics. It is extremely helpful to take short cell phone videos and pics of what is happening and what things look like that are going wrong. The TIMELINE of events in your illness are most helpfull when specific. As indicated at NORD, there are well over 1200 RARE diseases. The two above NIH programs are finding new diseases regularly.
   

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(posted 27 November 2015; additions 5 July 2016)