Misdiagnosed With FND: From Inpatient Rehabilitation to Neurosarcoidosis

A Reddit user, u/Careful-Mention-4153, documented a neurological illness that was initially diagnosed as Functional Neurological Disorder (FND) during a hospital admission in June 2024. Several weeks later, after further investigation, the same patient reported that the FND diagnosis had been wrong and that they had been diagnosed with neurosarcoidosis.

The account is the patient's own public description of events and has not been independently verified through medical records. However, their Reddit history provides a useful chronology because they documented the FND diagnosis, neurological disability and rehabilitation before reporting the later diagnosis.

Acute neurological symptoms and hospital admission

On 24 June 2024, the then 25-year-old patient posted in r/FND under the title "Newly diagnosed currently in inpatient rehab :(". They reported a significant neurological history, including pituitary tumour surgery in 2018 and 2019 and seizures treated with Keppra.

According to the post, on 15 June 2024 they developed abnormal behaviour and slurred speech while out with their boyfriend. They were taken to the emergency department with a reported heart rate of 194 and were treated with Keppra. The following morning, they reported waking unable to feel or move the right side of their body. Stroke was initially suspected.

"On Sunday 6/16/24 I woke up and I couldn't feel the right side of my body it was completely paralyzed."

The patient reported being transferred to a stroke unit and undergoing neurological investigations. On 18 June, they were diagnosed with FND.

FND diagnosis followed by inpatient rehabilitation

The neurological disability was substantial. The patient reported initially being wheelchair-bound and unable to move their right leg.

"For 3 days I was wheelchair bound I couldn't move my right leg no matter how hard I tried."

Movement in their arm and hand began returning and their speech improved, but significant problems remained in the right leg. They reported eventually being able to walk approximately 100 feet with a walker before the leg gave way. The patient was therefore undergoing inpatient rehabilitation for significant neurological impairment while carrying an FND diagnosis.

Questions remained about the diagnosis

Despite being told that investigations had ruled out other explanations, the patient continued questioning whether another neurological disease could account for what was happening. They reported that MRI and CT investigations had been described as normal. An MRI of the cervical spine had also been performed while investigating multiple sclerosis, although movement reportedly affected the quality of the scan.

"How do I go about checking for MS since they said it was 'ruled out'"

That question became particularly significant only weeks later, when further investigation produced findings that changed the diagnostic picture.

A lumbar puncture changes the diagnosis

On 29 July 2024, the patient returned to r/FND with a post titled "MISDIAGNOSED WITH FND". After approximately six weeks carrying the FND diagnosis, further investigation had included a lumbar puncture.

The patient reported that 13 oligoclonal bands were found and that their doctor initially told them they had multiple sclerosis.

"I got a lumbar puncture done and my doctor said I had MS (13 bands)... BUT THENNNN... THAT WAS ALSO WRONG."

Further investigation then reportedly resulted in a diagnosis of neurosarcoidosis.

The original hospital MRI was reportedly not normal

Perhaps the most concerning part of the patient's account appeared in the subsequent discussion. During the original hospital admission, the patient said they had been told that their MRI and CT investigations were normal. After the later investigation, however, they reported that their neurosurgeon reviewed the earlier hospital MRI and reached a very different conclusion.

According to the patient, the neurosurgeon told them:

"Your MRI from the hospital showed the same conclusion we got to today so how did they stick with the FND diagnosis?"

If accurately reported, this means the later diagnostic concern was not simply based on a completely new abnormality appearing after the FND diagnosis. According to the patient's account, relevant findings were already visible on imaging obtained during the original hospital admission.

Neurosarcoidosis reportedly confirmed

Another Reddit user subsequently asked whether neurosarcoidosis had actually been confirmed. The patient answered:

"Yes they confirmed it he made me drive all the way to Boston for it."

The patient later discussed treatment, rehabilitation and the possibility of remission, and reported that their doctors believed the disease had begun in the brain rather than the lungs.

From FND to neurosarcoidosis in approximately six weeks

The chronology is what makes this account particularly striking. In June 2024, the patient experienced severe neurological symptoms including reported right-sided paralysis and sensory loss. They were diagnosed with FND and transferred into inpatient rehabilitation, but continued questioning whether another neurological condition had been missed.

Within approximately six weeks, a lumbar puncture reportedly identified 13 oligoclonal bands. Multiple sclerosis was briefly considered, further investigation followed, and the patient ultimately reported a confirmed diagnosis of neurosarcoidosis. Most significantly, the patient says their neurosurgeon subsequently reviewed the MRI from the original hospital admission and questioned how the FND diagnosis had been maintained when the earlier imaging reportedly contained the same relevant finding.

This is not simply a story of symptoms changing months or years after an FND diagnosis. According to the patient's account, evidence relevant to the eventual diagnosis may already have been present during the admission in which FND was diagnosed.

"Please advocate for yourselves"

After the experience, the patient's message to others was unequivocal:

"Please advocate for yourselves!!! If I didn't push the issues and not be afraid to share my symptoms I could have been living my life not knowing anything!!!"

The public record cannot establish exactly what occurred clinically without access to the patient's medical records and imaging. What it does document is a patient's contemporaneous progression from an FND diagnosis and inpatient neurological rehabilitation to further investigation and a subsequently reported diagnosis of neurosarcoidosis.

Sources: June 2024: Newly diagnosed and in inpatient rehabilitation, July 2024: Misdiagnosed with FND, and u/Careful-Mention-4153's public Reddit history.