Avoiding Delays in Neurological Diagnosis — The 1.0 Version
It is commonly reported that Guillain Barre Syndrome (GBS), Acute Inflammatory Demyelinating Polyradiculoneuropathy (AIDP), Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) and other variants are rare conditions. Data on the numbers of cases diagnosed are used to create rates among the general population. But, what if these conditions are not being diagnosed properly, or if months and years go by before a diagnosis is obtained; skewing the data. It may still be a rare(r) condition, but accurate data might mean an increase in attention to prevention, diagnosis and treatment. This concern has lead to my interest in creating a diagnostic guide for neurologists and primary care physicians.
Health literacy, patient engagement and activation are all concerns in healthcare today. If someone who is literate, engaged and activated can be impacted by a diagnostic error — and not receive needed treatment for paralysis; what does that say about those patients for whom we are most concerned? Unfortunately, too many people have shared stories of their delays in an accurate diagnosis or their current search for one that avoids the use of “idiopathic” until all likely causes are considered. This means too many people are mis-diagnosed and/or not receiving proper and/or timely treatment.
My own suspected diagnosis came after numerous Google searches when I wasn’t satisfied with “Idiopathic Peripheral Neuropathy” and an order for physical therapy. As my condition worsened, I turned to virtual second opinions from neurologists at Mayo Clinic and Tufts and my suspicion was confirmed. These physicians pointed me in the right direction — seeing a neuromuscular specialist for the testing and treatment I needed.
I have tremendous respect for the physicians who practice the art and science of medicine. It is increasingly complex due to advancements in understanding and technology; all while physicians navigate the evolving healthcare delivery system. Across my career in hospitals and as a consultant/advisor I’ve picked through and boiled down information for translation, so healthcare professionals could understand, and act. As a patient, it seemed this expertise was once again needed. The result is a guide for primary care physicians and general neurologists to help them sharpen their diagnostic skills with GBS, CIDP, AIDP and other variants.
Not all patients who experience GBS are completely paralyzed, on ventilators and in the intensive care unit for months. There are two primary goals with this guide. The first is to further increase awareness that the presentation of these neuromuscular conditions can vary. The second, and most important, is to minimize the risk that individuals will struggle with the symptoms for too long, or have permanent damage to their nervous system due to a delay in treatment. Had I received treatment in a more timely manner, would I have recovered fully? I can only wonder and do my best to reduce the risk of this happening to others by sharing my patient experience.
Please share this brief two-page guide with the neurologists and other physicians you know. But, more importantly, contribute your own experiences and provide feedback by commenting or sending me an email. This guide will evolve and become more refined and useful for healthcare professionals when we all use our voice to build a more robust tool for those who care.
Originally published at https://thielst.typepad.com.
