Functional neurological disorder (FND) is usually diagnosed when an individual has neurological symptoms but no clinical evidence of disease, and a history of personal trauma. The theory is that the brain converts stress or trauma into physical symptoms, and the treatment involves cognitive behavioral therapy (CBT) aimed at rewiring the brain. Elly Littlejohn absolutely has a history of trauma. In 2018 she suffered every parent’s worst nightmare, when her daughter Alysia was killed along with 3 others while riding in a car driven by a drunk driver. After losing her daughter, Elly began experiencing troubling physical symptoms. When she went to the doctor she was quickly diagnosed with FND. But there was a huge complicating factor, Elly’s MRI showed two lesions in her brain. Elly’s doctor couldn’t explain these lesions, but stuck to the FND diagnosis.
On this episode of the Major Pain podcast, Elly shares her shocking story of medical gaslighting and negligence. This interview was recorded in September 2023, the same month that Elly was finally diagnosed with multiple sclerosis (MS) after years of bouncing from specialist to specialist as her symptoms worsened. Although MS was a potential diagnosis that was mentioned to her many times, no doctors were willing to override her initial FND diagnosis and begin MS treatment. By the time her diagnosis was confirmed, Elly had 15 lesions in her brain and a lesion in her spine. She is now starting DMT (disease-modifying therapy) in hopes of slowing the progression of her disease.
Elly is a passionate advocate for the chronically ill, and people who have suffered child loss. Doctors are often quick to brush off medical complaints from patients who have experienced extreme trauma, making it extremely difficult to be a trauma survivor who also has a chronic illness. Elly is raising awareness through her TikTok, her nonprofit organization and by sharing her story in this podcast episode.
Find the Alysia Littlejohn Foundation here: https://www.intheblinkofaneyeinc.org/
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast
This episode of Major Pain is supported by a creator grant from the Stimpunks Foundation. This is a nonprofit organization providing mutual aid and human-centered learning for neurodivergent and disabled people. Check them out online at https://stimpunks.org/