Treating virtual symptoms Functionality in MS

Wojciech Pietkiewicz

Objectives

• To be able to tell with good probability what is organic and what is not in your MS patient

• To be able to understand where non-organic problems come from

• To be able to tell the diagnosis to the patient• To know how to approach the conditionTo make sense of the idea of psychosomatic disease

What we will talk about

• Problems with definitions and glossary• Where the problem possibly comes from• How to diagnose it• How to tell the patient about the diagnosis

Case1

• 35 yo female presented for fourth opinion on her multiple symptoms

• Her twin sister has MS• Her scans show some white matter changes that can be

interpreted as demyelination• Her neurological examination is normal and her

symptoms are multiple, non-focal/ non characteristic. She has tiredness, pain all over, bladder and bowel symptoms. Came with the list of 20 other problems

• The symptoms have been there for 7 years

• The opinion is that she cannot be given the diagnosis of MS at that stage

• To this she reacts with verbal abuse• She has a fixed belief that doctors communicate secretly

with an agenda to show her that she is wrong• She is convinced her symptoms are MS related and she

has print-outs from the Internet to prove this. • She has no idea what benefit she would get from the

diagnosis and the question makes her verbally aggressive. • She has written many formal complaints about four trusts

and escalated them to The Ministry Of Health

Case2• 26 yo with newly diagnosed MS has contacted MS Help Line

due to new onset of pins and needles in her both legs (on the top of the previous symptoms). She feels tired and dizzy

• Over the last 9 months she contacted MS help line 15 times and was seen in MS relapse clinic 5 times and ad-hoc in MS clinic 5 times

• Her scans show changes typical for MS although there is no clear activity on numerous scan follow-ups.

• Neurological exam is non-contributing• In spite of numerous complaints she remains with good

health -mobility wise

Case3

• 50 yo male presented with r foot drop• 20 years ago he had numb hand on the left but

the GP said it would go over time (although he did not know what it was). It indeed improved and he quickly forgot about it

• No other symptoms. Neurological examination shows 3+ reflexes in r leg and up going plantar on that side

• MR head a few non specific white matter changes

?

• Case1: – Multiple nonspecific abnormalities – Non contributing examination and scans– Very strong views on diagnosis– No reasonable rationale for the diagnosis– Complete resistance to any other opinion than her

own– Multiple opinions with the same outcomes but in spite

of this the patient will not accept she does not have MS at this stage

• Multiple complaints to authorities• Conspiracy theory on medical professionals

who communicate about her before she is seen and want to penalise her for trying to get to “the truth”

Main diagnosis

• Delusion of illness (not a functional/ psychosomatic disease)

• Case2:– Multiple symptoms– Established diagnosis of MS– No clear activity on abnormal scans

This patient’s symptoms typical for MS but the number of abnormalities and complaints is in contrast with the objective findings.

Diagnosis

• MS (organic disease)• Functional/psychosomatic symptoms being

main presentation(or significant functional overlay)

• Case3– Not too pronounced but clearly focal symptoms – Scarce presentation– Contributing examination– Non-contributing scans

Likely diagnosis

• Clinical MS

Somatisation disorder/functional disorder

• A longstanding tendency to have symptoms unexplained by disease

• Usually starting before the age of 30• Mostly women • At least one ‘‘conversion’’ symptom, four pain

symptoms, two gastrointestinal symptoms (usually irritable bowel syndrome) and 1 sexual symptom (dyspareunia, dysmenorrhoea or hyperemesis gravidarum)

Dissociative seizure/motor disorder (conversion disorder)

• Suggests dissociation as an important mechanism • Most often refers to two particular experiences:

depersonalisation, a feeling of disconnection from one’s own body and derealisation, a feeling of disconnection from one’s environment

• A motor or sensory symptom or blackouts not compatible with disease

• Causes distress and• May be related to psychological factors

Hypochondriasis

• Excessive and intrusive health anxiety about the possibility of serious disease which the patient has trouble controlling.

• Seeking repeated medical reassurance • This only has a short-lived effect • A form of addiction which can only be

overcome by a better explanation for symptoms

Factitious disorder

• Symptoms are consciously fabricated for the purpose of medical care (not money)

• These patients often have a personality disorder

• Very challenging to diagnose and even more to pass the diagnosis

Munchausen syndrome

• Describes someone with factitious disorder who wanders between hospitals, typically changing their name and story

• Seeking medical attention and often potentially harmful treatments

Malingering

• Means making up symptoms for material gain

Problems with nomenclature• Functional implies in the broadest possible sense a problem due to

a change in function (of the nervous system) rather than structure.• Non-organic, non-epileptic etc all have the problem of describing

what the problem is not rather than what it is.• Psychosomatic is supposed to mean an inter-action between mind

and body but in practice is interpreted in the same way as ‘‘somatisation’’, the psychological influence on the body.

• Psychogenic suggests an entirely psychological explanation for symptoms.

• Medically unexplained is a neutral term but one that patients’ may easily interpret as the doctor not knowing what the diagnosis is (rather than not knowing why they have the problem).

Worth to know

• You quickly learn that there are as many opinions on what a functional disorder is as health care professionals.

• Truly functional symptoms account for around 50% of consultations in neurology clinics

• The most commonly confused organic disease with psychosomatic illness is a migraine

• There is no single subject on functional illness in any medical training

• MS clinics are extremely susceptible and there is a general feeling of abundance of those symptoms among MS patients.

• MS by definition is hosting clusters of symptoms (by time and/or site). It is therefore mimicking functional symptoms and the other way round.

• Tiredness is seen in almost all MS patients whilst it is also a hallmark of functional disease.

• Pain is seen in 60% MS patients whilst it is practically always present in functional patients.

Statistics in neurology outpatients

• 50% have at least one functional symptom of some kind, even if it is not their main problem.

• 30% of new neurology outpatients have main presenting symptoms that are only ‘‘somewhat or not at all explained’’ by a disease. This includes patients with ‘‘functional overlay’’.

• 15% have a primary functional/psychological diagnosis (including pain and fatigue unexplained by disease).

• 5% have seizures, weakness, sensory symptoms or movement disorder which is thought by the neurologist to be functional/non-organic

• On average new neurology patients with functional symptoms are just as disabled as and even more distressed than those with a neurological disease.

Neurology inpatients

• 1–10% of neurology inpatients have a primary‘‘functional’’ diagnosis.

Statistics of conversion symptoms

• Dissociative/non-epileptic seizures account for about 20% of referrals to ‘‘first fit’’ clinics and to specialist epilepsy clinics.

• 50% of admissions to hospital with ‘‘status epilepticus’’ are in fact dissociative seizures/‘‘pseudostatus’’.

• Functional weakness has an annual incidence of at least 5/100 000, similar to multiple sclerosis.

• Functional movement disorders account for 5–10% of patients seen in a movement disorders clinic.

Examples of functional disorders• Gastroenterology: irritable bowel syndrome (IBS)• Endocrinology: borderline thyroid function• Respiratory: chronic cough,• Rheumatology: fibromyalgia, chronic back pain • Gynecology: chronic pelvic pain, dysmenorrhoea (not all)• Cardiology: atypical/non-cardiac chest pain, palpitations (not all)• Infectious diseases: (post-viral) chronic fatigue syndrome

(CFS/ME)• Ear, nose and throat: globus, functional dysphonia• Neurology: dissociative seizures, functional weakness and

sensory symptoms

How? And why?

• Always think how our brains were made• Consider Mother Nature made us between 2

and 1 million years ago and our brains are not very much different since

• From evolution point of view survival is the only thing that counts

• Our bodies and brains that rule them are made for survival

Some time ago…

• No surgeries• No doctors• No Tesco's• No tablets• No ‘Health and Safety’• No ‘Infection Control’• No rehab• No vaccinations

Instead:

• Eating only what found or chased successfully. • Food acquired at high cost usually of physical

activity• Extremely high risk of trauma• Prolonged periods of starvation • Small groups of people extremely dependent

on one another

So what happened if you had a flue?

• Naturally you would like to get better as quickly as possible. • Being equipped with a mind which is a perfect invention

you would tend to use it to override the healing time.• You would therefore be tempted to get up before you are

cured.• Is idea of you deciding when to get up good from survival

point of view?• There must have been a mechanism that would replace

your judgement. Otherwise lazy would survive and those full of energy would be at risk.

The mechanisms are still there today

• Extreme fatigue during the illness • Achiness or frank pain all over• Tenderness of tissues• Feeling ill, useless• Having poor concentration/memory• Dizziness

• It is unlikely to be very fatigued and in pain and run after food

• Assumed illness/injury can be healed• The infection will not be spread

So next time you have flue like illness and you straggle to raise your head from the pillow you know what sense it makes. Other than this there is no real medical evidence what the mechanism of fatigue is.

Illness behaviour

• Trying to save the limb that is in pain (would be switched to weakness not to use it)

• Harbour symptoms on one side (more attention to the affected side)

• Avoiding walking when imbalanced• Avoiding moving head when dizzy • Using walking aids or help of other people to

balance • Wearing dark glasses due to lightsensitivity

Illness behaviour reflects the propensity of the brain to limit processing of mismatched bits of information

Is it really functional?

• The more symptoms the more likely (this applies to MS patients as well)

• The vaguer symptoms the more likely• As a rule 3 or more unrelated symptoms implies

the patient should see a psychologist. • Specifically for MS number of symptoms would

be in opposition to normal examination and lack of activity on scans. Can the patient have 10 relapses per year?

Is it malingering?• Patients concentrate on their symptoms not impact• Do not seem to seek help• Get aggressive on slightest suspicion the consultation does not go well for

them• Prize your knowledge and trust you are a clever doctor when they walk in

but question your competency when you do not appreciate how ill they are

• Take time to describe symptoms • Blunt response to any treatment or have multiple side effects to any drug. • Never get better only worse• Do equally poorly on easy tests and difficult ones• Do not learn on the same test

• Don’t believe all the physical diagnoses in the medical notes. They may not be correct. ‘‘Asthma’’ may be panic disorder, the appendix or uterus may have been normal even though surgically removed.

• Don’t go into expressions of ‘‘depression’’ or ‘‘anxiety’’. • Don’t make a diagnosis of functional symptoms because someone has an

obvious psychiatric problem/personality disorder. Patients with psychosis are not especially liable to functional symptoms, and patients with any psychiatric disorder may be harbouring a neurological disease.

• Don’t avoid a diagnosis of a functional problem because someone seems too ‘‘normal’’. ‘‘Normal’’ people, including those with no depression/anxiety or previous history can get functional symptoms too

• Don’t misinterpret ‘‘exaggeration to convince’’ as ‘‘exaggeration to deceive’’. The patient who groans and sighs in an excessive way is more likely to be doing so to show you how bad their symptoms are (when they really do have them) rather than making up their symptoms from scratch in an attempt to deceive you

• Do not expect patients with functional symptoms to have depression, panic or anxiety.

Practical points for weakness

• Extremely weak leg but still can walk• Variable strength at examination• Grimacing during passive movement but otherwise

normal behaviour• Lack of effort• Give way weakness• Usually extensors weaker than flexors• Falls into your arms whilst examining walking, gait

typically with outstretched hands

Practical points for pain• Extreme pain when you try to move the limb but then moves it

freely • When you stretch the leg excruciating pain at 5 degrees but when

sitting stretch 90% with no pain• Level of pain 12/10 but patient can talk and smile• Rotation sign in LBP. Ask the patient to stand with their feet on the

ground and swing their whole body. Pain in the back is at odds with the manoeuvre which does not really mobilise the back.

• Axial loading. Low back pain on pressing on the head.• Superficial tenderness—extreme pain from light pressure over a

wide area of the back

Practical points for loss of sensation

• No characteristic distribution (neither the nerve nor root nor central)

• Patchy• Variable in time and space even during one examination• Sensory level at easy to remember areas: the whole

limb or from the umbilicus or split half. • Bizarre distribution of proprioception loss• All neurology on one side (eye, ear, sensation,

weakness)

What to do?

• Test vibration sense on both sides of the forehead

• “say ‘yes’ when you feel it and say ‘no’ when you don’t”

• Re-test the levels and patchy areas

Practical points for movement disorders• Tremor disappears with distraction—eg, counting

backwards in sevens. Tremor of Parkinson’s disease may be more noticeable during distraction.

• Variable frequency is more helpful than variable amplitude.

• Entrainment—ask the patient to make arhythmical movement with their ‘‘good’’ side. They will either not be able to do it (and be unable to explain why) or the rhythm will entrain to the same rhythm as the affected limb.

• Alteration with weight or attempted immobilisation—functional tremor typically worsens when an arm is weighted or if an examiner attempts to make it still by holding on to it.

Typical ‘functional patient’ trait (practical but not evidence based)

• The patient has had more than two opinions on the medical problems• Has multiple symptoms and has to come with a list to remember them (as

per definition more than two at a time but usually easily exceeding 10)• Some patients come with lists of symptoms containing over 50 items• Start the medical history with “where to start?”• Have very meticulous description of their symptoms sometimes day by

day for years taking fat layers of handwriting or endless printouts “for your perusal”

• Have lack of insight into the symptoms and have unreasonable expectation you are going to go through every bit with them

• You have an internal and rather unprofessional feeling you regret you have asked

Typical ‘functional patient’ trait (practical but not evidence based)

• Put a lot of effort to convince their symptoms are not made up• Assume you would not believe them• It transpires at any time of the consultation that the patient ‘already

heard something similar’ and they did not come to see you to hear it again

• Twist other opinions or reports that fit their view on organic background (artificially created objectiveness)

• Have a strong tendency to quote others rather than answer directly • Tend to use proxies to describe how badly they feel• Fabricate statements of other healthcare professionals which are not

confirmed in documentation • Consultations tend to take double to triple time

Why do people have functional disorders and why it is so common in chronic conditions?

• Brain plasticity plays main role in rendering the symptoms.• There are mechanisms in the brains that are protective and adjust

attention depending on importance of symptoms in particular individuals.

• Even common cold can trigger tiredness. Recovery may not be enough for the brain to decide the organism is ready to resume normal activity. Trying to overcome fatigue in a natural mechanism of willingness to recover quickly triggers the protective mechanism and turns the “knob” down. As a result more tiredness appears.

• Chronic conditions will host a lot of organic symptoms out of which any single one can trigger exaggerated symptoms that will not have any reflexion in anatomical damage.

Approach

• You have established that your patient might have at least functional overlay.

• Do you think it is MS itself or maybe functional problems are main problem?

• How are you going to decide what to tell?• Will you tell it is MS or psychosomatic or

both?

Very reassuring

Scientific

Unsure-reassure

Knowledge based

Helpful

How to handle it1 Tell as soon as you suspect. It is easier to reverse the diagnosis of a functional disorder than the other way round. 2 Explanation during first consultation is often enough to cure. The longer it takes the worse prognosis. 3 The fewer tests the better. The more complaints the fewer tests. Always mention you know they will be normal. The same relates to consultations. 4 Ask for a second opinion but mention it is to reassure not to check if you are right5 Refer to a psychologist/psychiatrist with the interest in functional disorders6 Most of patients will respond to good physiotherapy with a person with the experience in functional disorders7 Aids can be an obstacle to recovery. This applies to all diseases and it worth mentioning it to the patient. 8 Refer to a good source: neurosymptoms.org9 Emphasise you believe your patient. Do not be dismissive or suspicious. The patient’s distrust will cause failure of treatment.

Give the chance of normality!• It really depends how you sell it!• It is normal for every one to have functional symptoms• Patients need to understand that their symptoms are as real

as anyone else’s or worse as they may not be easily explained• The main barrier is usually a patient thinking medical

professional doubt the reality of their symptoms• Patients have to be reassured that the background of their

problems may be explored sufficiently to exclude organic cause

• Multiplying tests and opinions is harmful and it needs to be explicitly expressed to the patients

Examples of common functional mechanisms that helps explaining things to the patients

• In a way everything we feel or learn is “functional”

• Scratching your head when you know little insects are around you

• Parenthood • Falling in love• Knowing how to drive a car• Hating spiders

Don’ts

• Openly question a diagnosis of a functional disorder of another professional

• Be afraid of the implications of the misdiagnosis• Use suggestion of a psychology-related problem• Use a lot of tests to prove you are right• Ask for a row of opinions• Tell the patient only what they do not have• Give the patient vague replacement diagnosis

Do’s

• Specifically patients with MS need to be reassured they will be treated seriously as any other ones.

• It helps to explain that treatment of psychosomatic/functional problems is the same for MS patients.

Basics of management

• Treatment should be explained early. • Psychologist/psychiatrist with special interest in

the disorders is the main specialty. • The treatment is with understanding/

desensitisation/pacing/distraction• It is long term • The key to success is to convince the patient they

have psychosomatic disease • Understanding the idea of it is crucial.

Pacing

• Patients and healthcare professionals often miss the main point in understanding what pacing is

• For many it is adjusting lifestyle and being careful about not overdoing things or increasing some dose of exercise slowly

• Pacing almost looks like ‘do not make it worse’ treatment

• Remember the mechanism od brain “watching” what you do and downregulating the maximum effort you can do exercising or using your senses.

• Discovering what makes your brain thinks is too much for you is the only way to approach it.

• The system cannot be ridden (it is the whole point of its existence to prevent it). It can be only rewired and the mechanisms are those of slow udjustment.

• The goal should be recovery.

Examples of successful treatments

• Exercising balance on Wii board for dizziness• Adjusted pacing for chronic fatigue• Regulating lifestyle and regular sleep for

generalised pain and allodynia (FM-like symptoms)

• Learning the pattern of distraction of disturbing symptoms

• Neurosymptoms.org

Thank you