Advice from an FND Sceptic for Those Newly Diagnosed

25 Jan 2026 Christoff Trüter Spousal caregiver

4

When my wife received an FND diagnosis three years ago, we were completely unaware that such a disorder even existed and were unprepared for the consequences that came with it.

My wife immediately saw red flags when the neurologist at the time suggested that she was going to “think herself better.” At that point, she had already been progressively getting sicker over a period of four years. When I started researching FND, I found it quite odd that the clinicians involved at the time (neurologist, psychologist, and psychiatrist) were ignoring their own holy scriptures (the DSM-5) about progression and FND.

After three years of reviewing the medical literature and consulting specialists from different fields, I have grown very skeptical. It no longer seems believable that my wife has this disorder. In my view, it is often neither appropriate nor safe to diagnose Functional Neurological Disorder (FND) as the main condition, especially when symptoms do not clearly match the usual positive signs, when other possible causes have not been fully ruled out, or in sudden cases where a quick label can cause harm.

Positive signs often depend on the doctor's subjective judgment, with differences between examiners, limited agreement in studies, and lower reliability when signs are weak or unclear.

What advice would I give to anyone newly diagnosed with this disorder? Advice that I wish I had received back then?

1. Demand clarity
   

   
   Have your clinician draft an official letter that clearly states the exact criteria they used to reach this conclusion. Since there are positive rule-in signs associated with the disorder, they should, at a minimum, follow those diagnostic rules and be able to provide documentation of them.

   This cannot be a case where “nothing else fits” or where they reached a diagnostic impasse and simply assigned this label.

   If they cannot provide this, immediately reject the diagnosis and seek a second opinion.
   
   

2. Demand monitoring
   
   

   Insist that your condition be closely monitored with a clear follow-up plan. Keep a concise journal of your symptoms, including dates and times. This will help determine if symptoms fluctuate during the day or worsen over time.

   Keep a record of everything and have your clinician explain possible reasons for any progression.

   For example, Dr X concluded that my hair loss is somehow “functional.”
   

   Some clinicians tell patients not to keep a symptom journal. They worry it might make people focus too much on symptoms, increase anxiety, or seem like hypervigilance in functional conditions. In my experience and from patient accounts, this advice can feel dismissive and limit a person's ability to track real patterns or changes.
   
   

3. Get other specialities involved
   

   
   A multidisciplinary treatment approach is part of the official FND treatment philosophy. However, these professionals are generally expected to be aligned with the diagnosis, which usually includes psychologists, psychiatrists, and various therapists.

   Buy-in to the diagnosis should be irrelevant. Prefer clinicians who will analyse your condition from different angles and contexts, recognising that even though symptoms appear neurological, they may actually be reflex reactions to issues elsewhere in the body.

   For example, consider viral or bacterial causes, or how other organs, like the liver, can present with neurological symptoms, consider the effects of psychopharmacology as well.

   If optical symptoms are present, involve an ophthalmologist. If vestibular issues appear, involve an otolaryngologist, and so on.
   
   

4. Avoid echo chambers
   

   
   Joining an illness or disorder community on a social network can be very helpful, but it can also be risky if you become too attached to the diagnosis. When a diagnosis becomes part of your identity, it may be defended with the fervour of a crusader. This is especially concerning for a disorder that is purely clinical in nature, with no biomarkers and only nonspecific fMRI results, relying entirely on the subjective opinion of a clinician.

   Remember, you are much more than what is wrong with your health. Stay sceptical and remain open to other possible differential diagnoses.

Consider a broken leg: the pain it causes is not the diagnosis but a symptom, a signal that something is wrong. The fracture itself is the diagnosis. To label a patient as having “pain” and send them on their way without investigating the cause would be negligent. The same is true for FND. Calling a patient’s symptoms FND without thoroughly investigating potential neurological or systemic causes risks overlooking the real, treatable condition.

It is essential to identify what triggers or worsens these symptoms, as literature often links onset to concrete physical events such as injury, infection, acute illness, or other medical conditions, and tracking them objectively helps reveal real patterns rather than relying on vague or hasty assumptions.

Some clinicians believe that simply accepting an FND diagnosis will improve outcomes. Do not let them turn it into a matter of faith. Treatment should be judged by its effectiveness, not by whether you believe in it. Belief only matters for a placebo; real treatment should work regardless of what you think.

There may be days during this period of confusion when you doubt yourself, but know that your symptoms are real and your suffering is real. Do not prematurely close diagnostic doors by blindly accepting a diagnosis, and do not allow others to close those doors behind you either.

Demand better.