Title : Mogad, a view from the inside
Abstract:
This abstract outlines the personal experience of an individual (myself) who is a physician and also a patient diagnosed with MOGAD (anti-MOG positive NMOSD). The diagnostic journey spanned over four years, characterized by a diverse array of symptoms, initially dismissed or attributed to various causes by specialists focused only on there respective areas of expertise, despite objective evidence. This case underscores the lack of familiarity with MOGAD among neurologist in Spain, leading to delayed diagnosis and consequential long term effects following a relapse. The individual encounters skepticism from medical teams, frustration due to treatment stagnation, and daily debilitating pain, resulting in cessation of work. The lead of the presentation lies in acquiring comprehensive information on ongoing research endeavors, advocating for early diagnosis within the medical community, recognizing symptom variability among patients, and emphasizing the importance of broadening diagnostic approaches beyond expensive image studies. A call to action is made for intensified research efforts targeting specific therapies for MOGAD and improved support for afford daily symptoms in diagnosed patients, like pain.
Audience Take Away Notes:
- Neurologist and other physicians should think about NMOSD and how to do it
- A lot of patients misdiagnosed could be treated at time
- Think about more effective test and not in invasive or expensive studies.
- Include anti-MOG and others bio markers in blood test could change lives.
- Knowing the personal view of a patient, but by the eyes of a physician, is a gold.
- Give voice to rare diseases and get into the mind of the experts
