Diagnosis
On average, it takes 7 years between a patient’s onset of FND symptoms and the correct diagnosis. It is not uncommon for patients to spend years being referred to many medical specialists in search for an explanation for their impaired health.
It is estimated between 5 to 30% of patients seen in neurological clinics, movement disorder clinics, epilepsy centers and pain clinics are affected by FND. FND patients are also frequently seen in the emergency rooms. It is therefore not technically classified as a rare medical condition in Canada, it is classified as an “Orphan medical condition”. This is because, even though it is more commun than a “rare disease”, the medical pathway for care has not been established in Canada and few clinicians/specialists have received any up to date training on FND. It is important to note, FND is not a diagnosis of exclusion, it has specific clinical features of its own. Medical practitioners, allied health, and trainees are encouraged to join the FND Society to better serve this patient population:
https://www.fndsociety.org/about-us
Delays in diagnosis and access to FND aware rehabilitation lead to poor prognosis, and adverse effects from unneeded anti-epileptic drugs, iatrogenic complications from invasive procedures, medical costs due to unnecessary workups. Comorbid neurologic disease is estimated to occur in around 7-20% of FND cases. In addition, recent studies also suggest a high prevelance of Autism Spectrum Disorder (ASD) and/or hypermobile Ehlers-Danlos Syndrome/hypermobile spectrum disorders (hEDS/HSD) with FND.
The diagnosis is deemed reliable, with revision rates estimated at less than 5%.
Treatment
FND is a medical condition which varies considerably between patients, no two treatment journeys are the same. The individual patient’s biological, psychological and social circumstances require close consideration.
Specialists you may encounter during your rehabilitation include:
• Neurologist
• Neuropsychiatrist
• Movement Disorder Specialist
• Physiotherapist
• Psychologist
• Occupational Therapist
• Ophthalmologist
• Speech therapist
• Audiologist
Patients may also Require:
• Access to an FND support group (contact us at info@fndtogether.com)
• Access to mobility aids (i.e.: cane, walker, wheelchair…etc)
• CLSC care (or other in-home care services) to assist the patient in their home with day-to-day tasks
• Other aids (i.e., hearing and eye protection for patients who experience visual/auditory sense disturbances)
Since the patient’s abilities to drive or take public transportation may be restricted, they may require:
• Parking decal for individuals with disabilities
• Paratransit
You’ll often hear the term “multidisciplinary or Multiprofessionnal Team”. This just means a combination of the above disciplines. In many cases, it’s not individual specialists, but this collaborative, holistic approach which leads to the best results.
While you can receive treatments like physiotherapy or psychological therapy as an outpatient other more complex situations may need hospital visits.
Physiotherapy may involve retraining the body to move in a more natural way. This is particularly useful for FND patients who experience motor symptoms such as muscle weakness, paralysis, tremors, myoclonic twitches or jerks.
Psychological therapy might include Cognitive Behavioural Therapy (CBT), to help reduce the severity of FND symptoms by linking four elements: thoughts (what is going though your mind), feelings (emotions), physical sensations (symptoms) and behaviours (actions/response).
Medications: There are no recognized or approved medication to treat FND. However, medications may sometimes be prescribed to help relieve individual symptoms. The most frequently prescribed medications are to alleviate symptoms involving pain, sleep disturbance, depression, fatigue and anxiety. Some FND patients function better with medications and some FND patients function better without them. It is particularly important to consult with your physician before starting or interrupting any medical prescriptions.
Collaborative partnership
It should also go without saying that treatment should always be a collaborative partnership between you and your clinicians. You should feel that your opinion and perspective is being heard, that you understand the treatments you are being offered and that you are actively participating in your treatment rather than this being something that is “done to you”.
If clinicians don’t know a condition well, they won’t be able to explain it to patients. These discrepancies can potentially lead to unnecessary tension in patient-doctor relationships and in turn, long-term adverse effects for the patient.
In order to improve the care provided to FND patients, FND training programs need to be distributed to Primary Care Physicians, Emergency Medicine, Neurology, Psychology and Psychiatry.
Delivery of the diagnosis is a critical step in helping the patient manage FND. It is important to explicitly state that symptoms are not faked and are real and it is most effective when the diagnosis is delivered by the neurologist first (or whomever makes the diagnosis). Most patients and their family value the education on the brain mechanism (neuroscience model) and appreciate the validations of their symptoms after having been accused of malingering. Providing a clear affirmative diagnosis of FND and reviewing the positive medical signs and symptoms is most beneficial as opposed to listing diagnoses the patient does not have.
Timely access to an FND aware multidisciplinary team has shown to improve prognosis for FND patients.
The information above is for informational purpose only, it is not to be construed as medical advice. It was compiled from various sources (websites, research articles, webinars, and interviews).
Many thanks to the sources below for making
this information available to FND patients:
FND Hope International
Neurosymptoms
Functional Neurological Disorder Society
National Organization for Rare Diseases
Mayo Clinic
PubMed
Frontiers in Neurology
myFND