Diagnosed With FND After Losing Her Daughter. Years Later, Elly Had 15 Brain Lesions and Multiple Sclerosis
FND Nope
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The full interview was published by Major Pain on 8 November 2023 under the title FND or MS? Elly's Battle for a Diagnosis After Child Loss.
Major Pain — Elly Littlejohn's full interview and episode notes
In 2018, Elly Littlejohn lost her daughter Alysia in a car crash caused by a drunk driver. Three other people were killed. What followed was years of grief, worsening neurological symptoms, and a medical journey in which her devastating personal trauma became central to how doctors interpreted her physical illness.
Elly was diagnosed with functional neurological disorder (FND), despite an MRI showing two lesions in her brain. She followed the recommended psychological treatment, including approximately four months at an intensive trauma treatment facility. Her neurological problems continued. Years later, after further symptoms, additional brain lesions and abnormal spinal fluid findings, she was finally diagnosed with multiple sclerosis (MS) in September 2023.
The story is not simply about an incorrect diagnosis. It is about what can happen when an existing diagnosis becomes more influential than the evidence emerging after it.
Two Brain Lesions, But the Diagnosis Was FND
Elly had experienced neurological symptoms long before her daughter's death. Following the loss of her mother in 2006, she recalled headaches, blurred vision, numbness and tingling. Multiple sclerosis was mentioned as a possibility at the time, but her symptoms improved and she did not pursue the recommended neurological follow-up.
After Alysia's death in 2018, Elly developed severe headaches, numbness and pins-and-needles sensations in her legs. Her primary care doctor ordered an MRI, which revealed two brain lesions, and referred her to a neurologist familiar with MS.
According to Elly, the neurologist considered the lesions insufficiently characteristic of MS and instead attributed her symptoms to FND, with particular emphasis on her history of trauma. Elly also believed the neurologist viewed her symptoms through the fact that another bereaved mother she knew had recently been diagnosed with MS.
Two nonspecific brain lesions do not automatically establish multiple sclerosis. Their location, appearance and clinical context matter. But neither does a history of bereavement establish FND. The question is whether the neurological symptoms and abnormal imaging received adequate investigation and follow-up, rather than being explained away through an assumption about trauma.
Elly accepted the diagnosis and followed the treatment advice. She travelled to Arizona for intensive inpatient trauma treatment, spending approximately four months away from her family. Yet the neurological symptoms continued to come and go. She eventually learned to live with them because she believed she had already been given the explanation.
That is one of the most damaging aspects of a potentially incorrect diagnosis: patients can stop seeking further investigation because they have been persuaded that the answer has already been found.
Her Vision Deteriorated. The FND Explanation Remained.
In 2022, Elly experienced a sudden episode of severely blurred vision while travelling in a car with her partner. She later consulted her ophthalmologist, who reportedly found that her vision had deteriorated substantially since her previous examination and recommended renewed neurological assessment.
Elly returned to the neurologist who had diagnosed FND. According to her account, the response was another explanation of FND and questions about whether she had completed the recommended treatment. Her partner witnessed the consultation.
This is where the story becomes especially disturbing. Elly was reporting new visual symptoms against a background of neurological complaints and previously documented brain lesions. Yet she describes being directed back to the same diagnosis rather than receiving the further investigation she was seeking.
Eventually, a neuro-ophthalmologist reviewed her history and ordered updated brain imaging and a lumbar puncture. The new MRI reportedly showed approximately ten brain lesions, compared with the original two. Her spinal fluid testing also reportedly identified twelve oligoclonal bands.
Oligoclonal bands can support a diagnosis of MS when interpreted alongside appropriate clinical and MRI findings. They are not exclusive to MS and cannot establish the diagnosis on their own. Nevertheless, the combination of progressive neurological symptoms, changing MRI findings and abnormal cerebrospinal fluid warranted serious investigation.
For Elly, that investigation had taken years.
Even the New Evidence Struggled to Dislodge FND
The neuro-ophthalmologist suspected MS and referred Elly to specialists for further evaluation. But according to her interview, the MS team remained reluctant to confirm the diagnosis. She recalled being told that disease-modifying treatment could be harmful if she did not actually have MS, and that further monitoring over six months to a year was preferable.
Avoiding an incorrect MS diagnosis and unnecessary treatment is a legitimate medical concern. MS medications can carry substantial risks, and clinicians must apply appropriate diagnostic criteria. But the existence of a previous FND diagnosis is not, by itself, a reason to discount new evidence of possible inflammatory neurological disease.
The crucial issue is whether the clinicians' decisions were based on a careful assessment of the available evidence or whether the original FND label had become an obstacle to reconsidering the case. Elly's account raises that question directly.
By September 2023, she had finally received an MS diagnosis. The podcast reports that she then had fifteen brain lesions and one spinal lesion, and was preparing to begin disease-modifying therapy to reduce the risk of further disease activity.
The interview does not establish exactly when each lesion developed, whether earlier treatment would have prevented particular lesions, or whether she met the full MS diagnostic criteria at an earlier appointment. Those questions require clinical records and specialist review. What it does establish is the sequence Elly describes: an initial FND diagnosis, persistent and worsening symptoms, accumulating objective findings, and years before an MS diagnosis was confirmed.
And Somehow, FND Was Still Part of the Explanation
One of the more revealing moments in the interview comes when Elly says she believes she may also have FND. The podcast host accepts that possibility and suggests that the combination of FND and MS could explain why some symptoms did not appear to match MS.
But where is the independent evidence establishing that second diagnosis? The interview does not identify the positive clinical signs used to diagnose FND or explain which symptoms were demonstrably functional rather than attributable to MS, another medical condition, or an unresolved cause.
Coexisting FND and MS are possible. That possibility, however, is not proof that both conditions are present in this particular patient. Nor does having symptoms that are not readily explained by MS automatically establish FND.
This matters because the original diagnosis apparently survived years of contradictory developments. Even after MS was confirmed, FND remained part of the narrative without the interview providing a clear clinical justification for retaining it.
A diagnosis should not become immune to scrutiny simply because it was written in a patient's medical record first.
Grief Is Not a Neurological Diagnosis
Elly's trauma was extraordinary. She had already lost both parents before losing her daughter in a preventable crash. She describes the devastating psychological consequences of that loss, including a period when she struggled to care for herself.
None of that makes her neurological symptoms less deserving of investigation. A grieving parent can develop multiple sclerosis. Someone with PTSD can have inflammatory disease. A patient can experience severe psychological distress while also having objectively demonstrable neurological pathology.
The danger begins when trauma is used as an explanation rather than treated as one part of a patient's history. Once clinicians become convinced that someone's symptoms originate from psychological distress, subsequent complaints risk being interpreted through that assumption. The patient is no longer simply reporting symptoms; they are trying to overcome an established story about why those symptoms exist.
Elly's experience illustrates the potential consequences. She sought help, accepted the initial diagnosis, undertook intensive treatment and continued to report worsening neurological problems. Her eventual MS diagnosis did not arrive because her trauma disappeared. It arrived after further investigation revealed evidence supporting a different disease.
There is a particularly cruel irony in a bereaved parent having to fight to be taken seriously precisely because she is bereaved.
The point is not that every unexplained neurological symptom indicates MS, or that every FND diagnosis is incorrect. It is that an FND label must never become a substitute for investigating new symptoms, reviewing abnormal findings or reconsidering a diagnosis when the clinical picture changes.
Elly lost her daughter in 2018. She should not have had to spend the following years fighting to establish whether she also had a progressive neurological disease.
Her story is a reminder that diagnostic certainty without adequate evidence is not clinical expertise. It is an assumption, and patients can pay a very real price for it.