FND Diagnosis Followed by Multiple System Atrophy

A Reddit user, u/Najat00, documented a rapidly progressive neurological illness that was initially diagnosed as Functional Neurological Disorder (FND). The patient questioned that diagnosis publicly and specifically raised multiple system atrophy (MSA) as one of the conditions they feared could explain their deterioration.

Approximately six months later, they returned to the same post with a stark update: they reported that further investigation by other doctors had resulted in a diagnosis of MSA.

The account is the patient's own description of events and has not been independently verified through medical records. However, the fact that the original post predates the reported MSA diagnosis provides an unusually clear record of the patient's concerns while they were still diagnosed with FND.

Rapid deterioration before the FND diagnosis

In October 2024, the patient posted in r/FND under the title "I disagree with the diagnosis".

They described having been healthy and physically active before becoming ill, including being able to run 10 kilometres. Their condition then deteriorated dramatically over a period of months.

The symptoms they reported included progressive muscle weakness, neuropathic symptoms throughout the body, generalised dystonia, POTS and other autonomic symptoms, gastrointestinal problems, severe pressure sensations affecting the head and face, abnormal sensations of heat and profound insomnia.

Eventually, the patient required a wheelchair and became largely bedbound.

Diagnosed with FND

The patient reported undergoing neurological investigations including MRI and EMG testing. When these investigations did not provide an explanation for the severity of their symptoms, neurologists diagnosed FND.

The patient was not convinced.

Importantly, their disagreement was recorded before any reported MSA diagnosis. They questioned whether the progressive weakness and rapidly increasing disability could really be explained by FND.

They wrote that while they could potentially accept some symptoms as functional, they believed that the progressive weakness and severe physical disability had an organic cause.

At the time, the patient specifically raised both ALS and multiple system atrophy as possibilities they feared could explain what was happening.

Six months later

Approximately six months after making the original post, the patient returned and edited it with an update.

They reported that additional doctors had continued investigating their condition and that they had eventually been diagnosed with multiple system atrophy (MSA).

By this point, according to the patient, their condition had deteriorated considerably further. They described themselves as completely bedridden and reported complete anhidrosis, meaning they were no longer able to sweat.

The patient wrote:

"EDIT: this is now 6 months later and I am indeed dying from MSA."

They continued:

"It took many other doctors to finally get a diagnosis. I am now back to my home country Morocco for my final days."

Why this story is notable

This account differs from many retrospective stories of an alleged FND misdiagnosis because the patient's concerns were documented publicly before the reported alternative diagnosis.

The October 2024 post captures a patient saying that the FND diagnosis did not adequately explain their progressive deterioration. They specifically questioned whether MSA could be responsible. The later MSA diagnosis was then reported as an edit to that same post approximately six months later.

The chronology therefore does not depend entirely upon someone's later recollection of having previously doubted their diagnosis.

It documents the concern in real time:

Previously physically active -> rapidly progressive neurological and autonomic symptoms -> wheelchair and bedbound -> investigations including MRI and EMG -> FND diagnosis -> patient publicly questions FND and raises MSA -> further medical investigation -> patient reports MSA diagnosis -> complete bedbound state and anhidrosis.

An important limitation

None of this allows us to independently determine whether the original FND diagnosis was medically unreasonable, whether functional symptoms coexisted with another neurological disorder, or precisely what clinical findings ultimately resulted in the reported MSA diagnosis.

FND Nope has not reviewed the patient's medical records.

What can be established from the public record is that the patient documented severe progressive symptoms, publicly disagreed with their FND diagnosis, specifically raised MSA as a possible explanation, and subsequently returned to report that other doctors had diagnosed them with MSA.

Sources

October 2024 - "I disagree with the diagnosis" - original FND post and subsequent MSA update

Public Reddit history of u/Najat00

Note: This article summarises statements made publicly by the patient on Reddit. FND Nope has not reviewed their medical records and cannot independently verify the diagnoses, investigations, prognosis or other medical details described in those posts.