Functional Neurological Disorder The Art of Being Normal
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- Bernadette Lucas
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1 Functional Neurological Disorder The Art of Being Normal Professor Mark Edwards St George s University of London & Atkinson Morley Regional Neuroscience Centre, London medwards@sgul.ac.uk
2 Symptoms = Pathology?
3 Disability correlates very poorly with measures of disease across all illnesses Ruo et al, 2003
4 Words in search of meaning Psychogenic Malingering Supra-tentorial Factitious Somatisation Psychosomatic Medically Unexplained Non-organic Functional Hysteria Pseudo Conversion Disorder
5 What is wrong? A movement disorder caused by underlying psychological disturbance. A movement disorder not caused by a known neurological disease process. A faked movement disorder A movement disorder that is dramatically altered by distraction or non-physiological manoeuvres. 44 year old man, previously well. Fainted following donating blood. Came round with whole body shaking. Persistent left arm shaking. Now, after 2 years, has additional pain, fatigue and cognitive fog. Normal investigations.
6 Hoover s Sign accessing normal movement via diversion of attention Picture from Stone et al, 2005: JNNP
7 Tubular Visual Field: Triumph of belief over optics Picture from Stone et al, 2005: JNNP
8 Putting it Together Attention Beliefs/Expectations Agency
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12 This is because of stress. I ll refer you to psychiatry You haven t had a stroke/got MS etc You re very complicated: let s do a complicated test So you think I m making up my symptoms?! I can t find any trauma/depression /anxiety and I m very concerned about all these neurological symptoms Clinical Psychology? MDT inpatient?
13 JUST BE NORMAL
14 Being normal: Why and How How does a Stroke happen A blood vessel in the brain gets blocked. Why does a Stroke happen Genetics High Blood Pressure Diabetes Cholesterol Irregular heat beat Enlarged heart Smoking Homocysteine levels Thrombophilias Stress Lack of Exercise Etc etc etc.. Risk Factors: Often multiple ones affect a single person, often different between different people. Many we do not know about yet.
15 The How and Why of Functional Symptoms How There is a problem with the way the person can access or control their body Why Recent physical illness Recent or past stressful/traumatic events Joint Hypermobility Past or current depression and anxiety Likely many others we do not know about
16 Diagnostic Explanation starts with Diagnosis! Drain the symptoms dry be excited by and interested in print outs of symptoms! How confident am I? Do I need to do tests? Functional, not Functional, Functional +? How confident is the patient likely to be? What have they been told before? What are their core beliefs about symptoms?
17 Opening the discussion You have a functional neurological disorder This is a common problem I have seen this many times before I believe your symptoms, I don t think you re making them up or putting them on.
18 Explain how the diagnosis is made Did you notice how your tremor paused briefly when you were tapping with the other hand? This shows me that the basic wiring of your nervous system is ok, that it can work. Taking responsibility and authority away from the scanner and back into the clinic room. The problem is that your brain is not able to control or access your body normally. A clear demonstration of the theoretical possibility of getting better.
19 Discuss aetiology Acknowledge how little we know about why any illness happens. Discuss aeitology in terms of risk factors not causes. Recognise the issue of alexithymia in patients with FND. Triggering events (physical/emotional/both) If you took 100 people with FND and 100 random people, more of the people with FND would have past traumatic events, recent life events, anxiety and depression These are risk factors that can make people more vulnerable to developing FND, but like all risk factors they may or may not be present in an individual person. Sometimes the body is in a state of fight or flight even when we are feeling emotionally calm
20 Develop Skills in Effective Triage Explanation and follow up Educational resources Self management advice Pain management Physiotherapy Psychological Therapy Inpatient Rehabilitation Experimental Treatments
21
22 Randomised Feasibility Study of a Physiotherapy Programme for Patients with Functional Motor Symptoms. Nielsen et al (JNNP, 2017) Intervention Group mean (SD) Control Group mean (SD) Regression coefficient for group, Cohen s d BASELINE FOLLOW BASELINE FOLLOW UP UP baseline as covariate (95% CI) SF36 Domains Physical function 34 8 (23 7) 51 9 (27 2) 23 7 (19 0) 23 2 (21 3) 19 8 (10 2, 29 5) 0 70 Physical Role 31 7 (28 9) 47 0 (30 3) 19 4 (21 7) 26 8 (22 5) 13 0 (0 8, 25 2) 0 46 Bodily Pain 45 6 (33 5) 47 4 (33 1) 32 1 (25 3) 33 9 (27 4) 3 6 (-8 0, 15 3) 0 12 General Health 47 3 (23 9) 54 1 (28 3) 40 7 (23 4) 39 6 (22 6) 9 0 (-0 1, 18 2) 0 34 Vitality 32 3 (21 4) 39 2 (27 3) 26 6 (17 6) 28 3 (20 2) 6 2 (-3 6, 15 9) 0 25 Social Function 39 7 (33 2) 56 9 (30 2) 34 4 (29 8) 37 0 (25 1) 17 1 (5 0, 29 2) 0 58 Role Emotional 70 1 (29 5) 68 7 (34 5) 61 0 (32 6) 62 5 (35 4) 0 1 (-15 1, 15 4) 0 00 Mental Health 65 5 (21 1) 67 9 (23 8) 58 4 (23 8) 59 3 (25 2) 3 4 (-6 4, 13 2) 0 14 Physical Summary 33 1 (11 1) 38 7 (10 8) 28 7 (7 9) 29 5 (9 2) 5 9 (2 1, 9 7) score 0 54 Mental Summary score 45 2 (13 0) 45 9 (13 6) 42 6 (13 3) 43 3 (14 2) 0 9 (-4 9, 6 8) 0 06 Health related costs 3-6/12 after treatment: 444 Intervention vs. 968 Usual Care Intervention Group Control Group Much worse 0 3 (11%) Worse 1 (3%) 6 (21%) No change 7 (24% 14 (50%) Improved 11 (38%) 5 (18%) Much improved 10 (35%) 0 Collapsed Scores Good Outcome 21 (72%) 5 (18%) Poor Outcome 8 (28%) 23 (82%)
23 Nielsen et al, 2016
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26 Experimental Treatment Therapeutic Sedation 10 cases Paraplegia/ Fixed Dystonia Propofol sedation for ~30 mins Median duration 9 months 4 cases asymptomatic within 1 week 4 cases much or slightly better 2 cases no improvement Stone J, Hoeritzauer I, Brown K, Carson A J Psychosom Res With thanks to Jon Stone
27 Organising a Service for FND: The final step in being normal Access to rapid positive diagnosis Triage into specific effective treatments that prioritise long-term self-management. Mechanism for long-term follow up of people with chronic symptoms and rapid response to new symptoms and relapses.
28 The final, final step in being normal
29 Collaborations and Acknowledgements Glenn Nielsen Tiago Teodoro Kate Holt Anne-Catherine Huys Mahinda Yogarajah Lucia Ricciardi Francesca Morgante Anna Sadnicka Jan Coebergh Joana Macedo da Cunha Niruj Agrawal Norman Poole Mike Dilley Sarah Cope Isabel Parees Anne Marthe Meppelink Kailash Bhatia John Rothwell Benedetta DeMartini Davide Martino Maja Kojovic Jon Stone Alan Carson Marina Tijssen Tony Lang Karl Friston
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