Two Years Diagnosed With FND Before Autoimmune and Genetic Findings Emerged
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A Reddit user has described spending two years diagnosed with Functional Neurological Disorder (FND) and anxiety before further investigations reportedly identified autoimmune and genetic neurological conditions. Their account on r/SurvivingFND describes progressive paralysis, severe neuropathic pain, involuntary muscle activity, sensory disturbances and autonomic problems, including bladder, bowel and gastric dysfunction.
The author says they were accused of faking symptoms and struggled to obtain further investigations. They eventually pursued testing themselves, reportedly travelling from Canada to China. The results, according to the post and associated comments, included anti-CASPR2 and anti-GT1a antibodies, Charcot-Marie-Tooth disease type 2W and a PIEZO2 variant. These findings are patient-reported; the underlying medical records are not available for independent verification.
Why Might This Have Looked Functional?
The reported conditions can produce symptoms that overlap with those commonly attributed to FND. Autoimmune neurological disorders can cause unusual involuntary movements, weakness, pain and autonomic dysfunction. Hereditary neuropathies can affect strength, sensation and walking, while PIEZO2-related disorders can interfere with proprioception, making it difficult to sense where one's limbs are positioned.
These similarities do not mean the conditions are indistinguishable on examination. They mean that an unusual gait, abnormal movement or difficulty controlling a limb does not establish its cause. That distinction matters when the patient is deteriorating and the explanation remains uncertain.
The author also reported that an earlier lumbar puncture included cell counts but not the antibody tests that later produced positive results in serum. Having undergone investigations is not the same as having undergone the investigations relevant to the suspected disease.
When Having More Symptoms Counts Against You
This case brings to mind our earlier article, When Nursing Education Reinforces a Diagnosis, which examined an Australian FND learning guide for nurses. It contains this statement:
"The more symptoms the patient has, the more likely it is that the primary symptoms will not be due to a recognised disease."
That is quite an assumption. A patient with numerous symptoms might have a complex disease, several coexisting conditions or something outside the clinician's immediate experience. Yet the guide presents symptom complexity as a reason to consider recognised disease less likely. In the context of FND, the obvious implication is that a functional explanation becomes more plausible.
But symptom count is not a DSM-5 diagnostic criterion for FND. More importantly, failing to recognise a disease is not evidence that no recognised disease is present. In this Reddit account, the patient reports longstanding neurological difficulties followed by rapid deterioration. The subsequent findings suggest that more than one neurological process may have been involved. That possibility deserves investigation, not dismissal because the presentation is complicated.
The same guide also states:
"Many will then look elsewhere for a diagnosis, thus, consuming further resources in second opinions and unnecessary investigations."
It additionally refers to patients having:
"Very fixated views on an alternative diagnosis."
Put these statements together and the problem becomes obvious. Too many symptoms can count against recognised disease, while seeking another explanation can count against the patient. The Reddit author did exactly what this framing risks discouraging: questioned the diagnosis and pursued further testing. Those investigations reportedly produced neurological findings that had not been identified during the preceding two years.
There is no evidence that this particular guide influenced the author's treatment in Canada. The concern is the reasoning it illustrates. If both the patient's symptoms and their attempts to challenge the diagnosis are interpreted as supporting FND, what would actually count against it?
Does Finding Another Disease Change Anything?
The author describes finally escaping the FND and anxiety labels, although we cannot confirm whether the original diagnosis was formally withdrawn. The reported antibody and genetic findings also require clinical interpretation; a positive result does not automatically explain every symptom.
Nevertheless, finding another neurological condition should prompt a reassessment of symptoms previously attributed to FND. Calling the new condition a comorbidity does not settle the matter. If the newly identified pathology explains those symptoms, what independent evidence remains for the functional diagnosis?
This matters beyond one patient. If subsequent neurological findings are routinely treated as additional diagnoses without reconsidering the original attribution, it becomes difficult to establish when an FND diagnosis was actually wrong. A diagnosis cannot be meaningfully tested if contradictory evidence never changes it.
When Relief Becomes Controversial
The author says their original account was removed from r/FND, although the moderators' reasons cannot be verified. After reposting on r/SurvivingFND, they also faced criticism over the tone of their relief. One commenter questioned whether the post sounded superior; another defended the author's reaction after two years of reportedly inadequate answers.
The discussion illustrates another uncomfortable tendency: an account of possible misdiagnosis can become a debate about whether the patient has shown sufficient sensitivity towards people who still carry the diagnosis. The author's medical claims deserve scrutiny, but their relief at finding possible explanations is not the clinical issue.
The more important question is why someone reporting progressive paralysis and widespread neurological dysfunction spent two years under an explanation they believed was wrong before obtaining the investigations described in their account.
The Point
We cannot verify the diagnoses or reconstruct the original clinical decisions from a Reddit post. What the account does show is why complexity should not be mistaken for evidence of a functional disorder, and why a patient's continued search for answers should not automatically be treated as diagnostic fixation.
Sometimes the presentation is complicated because the disease is complicated. Sometimes more than one disease is involved. And sometimes the original diagnosis is simply wrong. None of those possibilities disappears because the patient has too many symptoms or refuses to stop asking questions.
References
- Original Reddit account and discussion.
- When Nursing Education Reinforces a Diagnosis. FND Nope.
- FND Learning Guide for Nurses. FND Australia.
- CASPR2-associated neurological presentations.
- Anti-GT1a-associated neuropathy.
- Charcot-Marie-Tooth disease type 2W.
- PIEZO2 and human proprioception.
Please note: This post discusses an account shared publicly on social media. The person's medical history and diagnosis have not been independently verified. We report what they said and link to the original source where possible.