We sat down with Dr. Dana Mitchell to hear her experience with autoimmune encephalitis, including her symptoms, diagnostic journey, and strategy to customize her own treatment protocol. Watch the full interview below:
Video Summary
Dana’s Diagnostic Journey
Dana’s symptoms emerged during her third year of medical school after a viral infection. Initially, she experienced prolonged recovery from the virus followed by persistent headaches. As her fourth year began, she developed emotional lability, fatigue, apathy, and other unusual symptoms.
It took eight weeks for Dana to seek medical care. Her symptoms progressed to include eye fatigue and electric shock-like sensations throughout her body. An MRI revealed early signs of encephalitis. However, her initial emergency department visit resulted in a misdiagnosis of anxiety and stress. For months, Dana endured a frustrating cycle of worsening symptoms and dismissive diagnoses.
Dana underwent numerous tests, including bloodwork, lumbar puncture, and various scans. Despite these extensive investigations, her diagnosis remained elusive. She even experienced bias from medical professionals who attributed her symptoms to the demands of medical school.
Further investigation, including a PET scan, revealed significant abnormalities. Dana’s parents then took her to New York City, where she was diagnosed with a condition in which the body’s immune system attacks the brain called autoimmune encephalitis.
The Importance of Antibody Testing
Antibody testing plays a crucial role in supporting the detection of autoimmune encephalitis. The test identifies antibodies in the blood or cerebrospinal fluid that target specific brain proteins, such as N-methyl-D-aspartate (NMDA) receptor. Advances in antibody testing have significantly improved the detection and understanding of this complex disease.
Seronegativity and Dana’s Diagnostic Challenge
Dana’s case presented a unique challenge as she was seronegative, meaning the antibody test did not detect any specific antibodies. Seronegativity can occur due to insufficient antibody concentration, or the presence of undiscovered antibodies. Despite the negative antibody test, Dana’s clinical presentation and other diagnostic findings, like her PET scan and MRI, strongly supported the diagnosis of autoimmune encephalitis.
Creating a Personalized Treatment Protocol
Dana’s treatment journey began with steroids and IVIG, which provided temporary relief but ultimately proved insufficient. Plasma exchange, a procedure that removes antibodies from the blood, offered the most significant improvement but was also temporary.
Drawing on her background in neuroimmunology and cancer research, Dana embarked on a quest to develop a personalized treatment protocol. Recognizing the limitations of conventional therapies, she understood the importance of targeting both the B cells that produce antibodies and the plasma cells that actively secrete them. Dana’s treatment involved a combination of rituximab, a B cell-depleting agent, and bortezomib, a plasma cell-targeting agent. This personalized protocol led to significant and sustained improvement in Dana’s condition.
Advice to Physicians
Dana emphasizes the importance of understanding a patient’s baseline and listening carefully to their experiences. She encourages physicians to explore alternative explanations for treatment failures rather than dismissing a patient’s concerns.
Dana’s Current Work
Dana’s experience with autoimmune encephalitis has profoundly impacted her professional trajectory. Her work now focuses on neurofibromatosis, a genetic disorder that predisposes individuals to tumors and neurological challenges. Dana views her experience with autoimmune encephalitis as a transformative journey that has provided valuable insights into both medicine and life.
