Symptoms

The disruption of nerve signals produces the primary symptoms of MS, which vary depending on where the damage has occurred. Over the course of the disease, some symptoms will come and go, while others may be more lasting. Some symptoms of MS are much more common than others.

Visual disturbance is the first symptom of MS for many people, most commonly impairment of vision in one eye (occasionally both), often with pain on moving the eye (optic neuritis due to inflammation in the optic nerve). Double vision may also occur.

The most common symptoms (along with visual) – typically a feeling of numbness in the limbs or face, often associated with unpleasant tingling, with impairment of sensation to touch, pinprick, and temperature. Less disabling than weakness, but often persistent and disturbing.

Pain syndromes are common in MS and may be acute and transient or persistent. Recurrent brief pains may be severe – often affecting one side of the face (trigeminal neuralgia) or the limbs respond to medication.

More common is persistent burning pain in the limbs associated with damage to sensory nerve pathways. A complicating problem is secondary pain arising from stiff joints related to limited mobility and spasticity.

Weakness affecting the legs more than the arms is the most common cause of motor disability. It is usually associated with spasticity of variable severity, which refers to a feeling of stiffness and slowness of movement in the limb and may also affect the trunk.

Spasticity is often accompanied by involuntary muscle spasms, at times painful, which may be sustained or brief and triggered by movement. Medication may help spasticity and spasms but does not affect weakness.

A constellation of symptoms which are more common later in the course of MS and may be substantially disabling. Clumsiness of limb movement with associated shaking (tremor) may be separate from weakness and is due to involvement of separate motor pathways.

It is often associated with unsteadiness on walking and dysarthria. There is no known effective treatment.

Bladder dysfunction, which occurs in up to 80% of people with MS, can usually be managed quite successfully with medication, but when more severe may require intermittent or sustained use of catheter drainage.

Constipation may be a problem, with bowel urgency and diarrhoea being much less common.

Sexual problems are often experienced by people with MS. Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along nerves running through the spinal cord.

If MS damages these nerve pathways, sexual response, including arousal and orgasm, can be directly affected. Sexual problems also stem from MS symptoms such as fatigue or spasticity, as well as from psychological factors relating to self-esteem and mood changes.

Problems with speech and swallowing occur most commonly in persons with more severe MS affecting mobility The main disturbance of speech is dysarthria with slurring and unclear articulation of words.

Difficulty swallowing or dysphagia, results from impairment of motor control of the muscles in the mouth and throat. When dysphagia occurs, food and liquids may pass into the airway, causing the person to cough and choke. Particles that remain in the lungs can cause aspiration pneumonia.

Evaluation and management by a speech/language therapist are very helpful.

MS can affect a person’s ability to think and remember. Common observations include: “I find it very hard to concentrate”, “I often can’t find the words I want to use”, “I have trouble remembering names of people”.

The technical term for problems with thought processes is ‘cognitive dysfunction’. Cognition refers to a range of high-level brain functions, including the ability to learn and remember information, organise, plan, and solve problems.

The ability to concentrate, the use of language and accurately perceiving the environment are also cognitive functions.

Approximately 50% of people with MS will develop problems with cognition, with severity usually being mild rather than severe.

Emotional changes are very common in MS. This may be a reaction to the stresses of living with a chronic unpredictable illness or because of neurologic and immune changes associated with the disease.

Common problems include depression, anxiety, mood swings, and irritability. Episodes of uncontrollable laughing and crying (called pseudobulbar affect) may occur in persons with established motor disability and pose significant challenges for people with MS and their family members.

General fatigue is one of the most common symptoms of MS, occurring in about 80% of people at some stage. It is a complex symptom of unclear cause in MS, which is not related to the degree of neurologic impairment, nor clearly to the occurrence of active inflammation. Fatigue can significantly interfere with a person’s ability to function at home and at work and may be the most prominent symptom in a person who otherwise has minimal activity limitations.

A person with MS will usually experience more than one symptom but NOT necessarily all of them.

Andrew Cushen

Trustee

Andrew is an independent corporate affairs and strategy consultant, working and living in Auckland. He has previously held senior positions in a number of corporate and not-for-profit entities in New Zealand.

Across his career, Andrew has worked as a funder of research projects (albeit in different areas than medicine and health), served in a number of not-for-profit governance roles, and been successful in developing and implementing collaborative funding models to extend investment in research and community programmes.

Andrew’s interest in Multiple Sclerosis stems from his father’s diagnosis with progressive MS in the early 2000s, and he is keenly interested in research, treatment and management approaches that may lessen the impact of MS on those diagnosed and their families.

Julia Howell

Trustee

Julia is a qualified nurse and midwife, with a varied career including specialising in eating disorders, primary healthcare, and management.    

Julia, in partnership with a GP, set up an outpatient clinical trials unit (Southern Clinical Trials). Under her leadership this grew into a network of 6 sites across NZ. This network merged with another one in 2021 to form PCRN, NZ’s largest clinical trials network. Julia is currently working as joint COO for PCRN.

Julia’s daughter was diagnosed with MS aged 14 and she has been intimately involved with her management over the years.

 

Jan Campbell

Trustee

Born in Ōtautahi Jan trained as a nurse in Christchurch, as a midwife in Winchester, UK and has a degree in philosophy with particular interest in healthcare and business ethics.

After working in the public health system in the UK and NZ, Jan joined Roche Pharmaceuticals based in Auckland in 1999. As a respected senior leader and Medical Director, she established a medical division over the ensuing 20 years responsible for significant investment in clinical trials in NZ, developing a top-class global medicine information service, compassionate medicine supply for kiwis in need, pharmacovigilance oversight and a team working closely with patients, specialists, MEDSAFE and PHARMAC to support the safe and appropriate use of Roche medicines.

As a retiree Jan has volunteered for Mercy Hospice in Auckland and the WBoP Museum in Katikati. Now living in Ōtepoti, Jan sits on both the MS Research Trust and MSNZ executive committees with a keen interest to ensure people with MS get a fair go in NZ.

Dr Elza Cloete

Trustee

Elza is a Neonatal Paediatrician at Christchurch Women’s Hospital. Originally from South Africa, she moved to New Zealand in 2006 and completed her specialist training in Auckland.

Subsequent to that she embarked on doctoral studies at the University of Auckland’s Liggins Institute and obtained a PhD investigating congenital heart disease in new-born babies.

Elza received the Vice-Chancellor’s award for best doctoral thesis for her research and is the author of several research publications. She moved to Christchurch in 2020 for a work opportunity in clinical practice.

Elza was diagnosed with MS in 2012 and brings a consumer perspective and research experience to the Trust.

Dr Ernie Willoughby

Trustee

Dr Willoughby has been a consultant neurologist at Auckland City Hospital (1979 to 2021 – now retired, emeritus) and clinical associate professor at Auckland University School of Medicine.

He directed the MS clinic at Auckland Hospital, has had a long association with the Auckland and NZ MS Societies, and is a member of the International Medical and Scientific Board of the MS International Federation.

Dr Brian Linehan

Independent Trustee

Dr Brian Linehan is a retired pathologist who was previously Managing Director of Medlab Hamilton.

He is currently Chairman of the Tranmere group of investment companies and a Director of a number of other private companies. In 2014, he retired after 12 years on the Council of the University of Waikato where he was Pro-Chancellor.

He is a past Chairman of the New Zealand Medical Association, past Chairman of NZMA Ethics Committee, past President and Chairman of CMAAO (Combined Medical Associations of Asia and Oceania) and past Chairman of IANZ (International Accreditation NZ).

Brian was diagnosed with MS in 2007 but is still active and mobile.

Peter Wood - JP, BCom, AGNZ, ACIS, FNZTA

Treasurer

Peter gained his commerce degree at Victoria University of Wellington and has been practising as a Chartered Accountant initially in Wellington and then in Tauranga.

Peter was a respected and trusted advisor to many businesspeople.
He is now resident in Auckland and consultants to a limited number business clients.

He has also served his community through involvement with Jaycees, Lions and Rotary clubs and a number of charitable trusts.

Peter is currently the Treasurer of Multiple Sclerosis Auckland and a trustee of the Multiple Sclerosis Auckland Trust. Peter is a Justice of the Peace and a member Governance New Zealand and is a Fellow of the NZ Trustees’ Association.

Neil Woodhams

Trustee

Neil is an independent health management consultant who has had an extensive career in health management as a senior manager or consultant to government, DHBs, primary care and community providers. 

Neil is President of MS New Zealand and a trustee of the MS Auckland Region Trust. Neil was also President of MS Auckland until he stepped down from this role mid-2020 to concentrate on his national roles.

Neil’s wife was diagnosed with MS in 1994. One of his four sons was also diagnosed in 2010.

Neil strongly believes in the objectives of the NZ Multiple Sclerosis Research Trust and has advocated for the establishment of the Trust for over 10 years.

Sir William Gallagher

Trustee

Sir William is renowned as a motivational, pragmatic and hands-on businessman in and outside of New Zealand and has a reputation both as a dynamic leader and one of NZ’s most astute businessmen.

Still very involved in the daily operation, he maintains regular contact with customers in the 130 countries in which Gallagher products are sold spending up to 150 days a year on the road representing the company and its philosophies and emphasising the ethics and integrity of his professional and personal dealings.

His achievements have been officially recognised by a string of awards, the latest to mark his commitment to enterprise and leadership skills being his Knighthood in the 2010 New Year’s Honours List. He was also the 1996 winner of the prestigious Excellence in Communication Leadership award, the first time in its history that it had been awarded outside of North America. He also received an MBE in 1987 followed by a Companion of the New Zealand Order of Merit (CNZM) in 1998.

Sir William Gallagher - KNZM, MBE. HonD

Patron

Sir William is renowned as a motivational, pragmatic and hands-on businessman in and outside of New Zealand and has a reputation both as a dynamic leader and one of NZ’s most astute businessmen.

Still very involved in the daily operation, he maintains regular contact with customers in the 130 countries in which Gallagher products are sold spending up to 150 days a year on the road representing the company and its philosophies and emphasising the ethics and integrity of his professional and personal dealings.

His achievements have been officially recognised by a string of awards, the latest to mark his commitment to enterprise and leadership skills being his Knighthood in the 2010 New Year’s Honours List. He was also the 1996 winner of the prestigious Excellence in Communication Leadership award, the first time in its history that it had been awarded outside of North America. He also received an MBE in 1987 followed by a Companion of the New Zealand Order of Merit (CNZM) in 1998.