When Your Brain Betrays You: How & Why Your Brain Misfires and Why Diagnosis Can Take Years

Introduction

Personal Connection

Today, we're diving into a topic that is very close to my heart: Functional Neurological Disorder (FND). This condition has defined much of my journey over the past several years. Having taken nearly nine years to diagnose and almost another three for treatment to commence, I know the challenges all too well.

In this piece, we'll explore what FND is, the psychological modalities and traumas that can lead to it, how you can get a diagnosis, and importantly, how to manage life with FND while waiting for treatment.

What is FND?

Definition

FND, or Functional Neurological Disorder, is a condition where patients exhibit neurological symptoms such as limb weakness, seizures, or sensory issues, without a structural neurological disease being present.

Symptoms

Symptoms can vary widely and often mimic other neurological conditions, including tremors, paralysis, gait issues, and even non-epileptic seizures.

Misunderstandings

It's often misunderstood or misdiagnosed because the brain isn't physically damaged, but rather, it's not functioning correctly.

Psychological Modalities and Traumas Leading to FND

Psychological Explanation

FND can be linked to the way our brain processes stress and trauma. The unconscious and subconscious mind can sometimes create a conflict within the body that manifests physically.

Common Triggers

Emotional trauma, significant stress, and sometimes even minor injuries can trigger FND symptoms. For many, the brain seems to react to psychological pain as though it were a physical injury.

Case Studies

Sarah

Sarah was a 28-year-old nurse who began experiencing debilitating symptoms, including sudden weakness in her legs and tremors. Initially misdiagnosed with a neurological disorder, she eventually received a diagnosis of Functional Neurological Disorder (FND). Through a combination of physical therapy, cognitive-behavioral therapy (CBT), and stress management techniques, Sarah saw significant improvement in her symptoms and was able to return to work part-time.

Tom

Tom, a 45-year-old software engineer, developed FND after a period of intense work-related stress. His primary symptoms included non-epileptic seizures and chronic fatigue. Tom's treatment plan included psychotherapy, occupational therapy, and mindfulness-based stress reduction (MBSR). Over time, he learned to manage his symptoms better and returned to a fulfilling professional and personal life.

Lisa

Lisa, a teenager, started experiencing uncontrollable muscle spasms and episodes of movement difficulties after a traumatic event. Diagnosed with FND, she received treatment that combined physical rehabilitation, family therapy, and educational support. Lisa's condition improved significantly, and she was able to regain a sense of normalcy in her daily activities.

These cases illustrate that with the right diagnosis and personalized treatment plans, individuals with FND can achieve substantial recovery and improve their quality of life.

Getting a Diagnosis

Challenges in Diagnosis

One of the biggest hurdles for FND patients is getting an accurate diagnosis. Many go years without a proper explanation for their symptoms.

Diagnostic Process

Diagnosis usually involves a thorough neurological examination, ruling out other conditions, and sometimes the input of a psychiatrist or psychologist. Here are some reasons why FND remains under-recognized and why there can be substantial delays in diagnosis:

Lack of Education and Training

Medical Curriculum: Many medical schools do not extensively cover FND, resulting in a gap in understanding how psychological factors can manifest as neurological symptoms.
Continuing Education: Practicing doctors might not receive adequate ongoing education on FND and related psychosomatic disorders.

Diagnostic Complexity

Symptom Overlap: FND shares symptoms with many other neurological and psychiatric conditions, leading to misdiagnosis or lengthy processes of ruling out other conditions.
Inconsistent Presentation: Symptoms of FND can be very diverse and fluctuate, making it hard to identify a consistent pattern.

Historical Stigma and Bias

Historical Perspectives: Conditions like FND were often labelled as "hysteria" or "psychosomatic," influencing perceptions and willingness to address the symptoms.
Mind-Body Separation: Traditional biomedical models often separate mind and body, causing reluctance to acknowledge psychological factors in physical symptoms.

Healthcare System Structure

Specialization Silos: Modern healthcare is highly specialized, leading to referrals from one specialist to another and delays in holistic diagnosis.
Time Constraints: Time constraints can prevent thorough evaluation of complex cases like FND.

Diagnostic Criteria and Tools

Lack of Standardized Tests: FND lacks specific diagnostic tests, relying heavily on clinical expertise and identifying positive signs of FND.
Uncertainty and Fear of Misdiagnosis: Doctors may hesitate to diagnose FND due to fear of missing other serious neurological conditions.

Referral and Treatment Pathways

Referral Inefficiencies: Poorly defined or inefficient referral pathways can delay diagnosis.
Multidisciplinary Approach: Optimal treatment often requires a multidisciplinary approach, which is not always available.

Patient Factors

Patient Communication: Patients may not provide comprehensive accounts of their symptoms due to embarrassment or fear, complicating diagnosis.
Symptom Interpretation: Patients' interpretations can affect how they present their problems to healthcare providers, leading to miscommunication.

Addressing these challenges requires enhanced medical education, better diagnostic frameworks, reduced stigma, and more integrated healthcare approaches. Increased awareness and understanding of FND among healthcare professionals can lead to earlier and more accurate diagnosis, improving patient outcomes.

Managing FND

Treatment Options

There isn't a one-size-fits-all treatment for FND. Options can include cognitive behavioral therapy (CBT), physiotherapy, and sometimes medications for associated symptoms like anxiety.

Self-Management

During the waiting period for treatment, self-management strategies can be invaluable. This might include mindfulness techniques, light physical exercises, and stress management strategies.

Understanding the Mind-Body Connection

The relationship between the unconscious and subconscious mind and physical symptoms is particularly relevant to FND. Here’s how:

Psychosomatic Response: Emotional states and unconscious conflicts can manifest as physical symptoms.
Fight or Flight Response: When perceived threats trigger prolonged stress responses, physical symptoms can emerge.
Muscle Memory and Motor Patterns: Subconscious tension or stress can lead to chronic muscle issues and functional neurological symptoms.
Somatization: Psychological distress can be unconsciously expressed as physical symptoms.

Conclusion

Recap

To recap, today we've deep-dived into what FND is, explored the psychological factors behind it, discussed the challenges in diagnosis, and looked at ways to manage the condition in the meantime.

Call to Action

If you or someone you know might be suffering from FND, I encourage you to seek out medical advice and tap into support networks. Knowledge and support can make a huge difference. I also have a 3 page PDF that summarises in a simple way the main aspects about FND that you can use to begin discussions with others. To receive it just DM or email me with your details.

You can also listen to my ThinkWORKS Podcast episode at ThinkWORKS Podcast | darreninform and join in the discussion at ThinkWORKS Episode 14: When Your Brain Betrays You | darreninform

Closing

Thank you for reading. Make sure to subscribe and leave a comment. Join me next time as we explore another fascinating topic. Until then, take care and stay curious.