NMO Study Day

Neuromyelitis Optica national Conference                                               12 March 2011 BVSC Centre Birmingham

Summary of talks

As specialist centres for the diagnosis and treatment of neuromyelitis optica, our services are constantly evolving to ensure we provide an excellent service for people affected by the condition.The aim of the day for adults and children with NMO and their families  included talks by neurologists, paediatrician, scientists, nurses and therapists to provide further information on NMO. Below are some of the main points that arose from the day.

Overview of Neuromyelitis Optica

NMO is a relapsing inflammatory condition affecting mainly the spinal cord and optic nerves. It is present in all races and all ages. NMO is rare and we think there are less than 1000 cases in UK. We do not know what triggers it, there are rare familial cases.
We do know that it is an auto-immune condition (like rheumatoid arthritis, Crohns disease and psorasis) that affects the brain and spinal cord. An antibody (a protein) produced by body’s white cells mistake the optic nerve and spinal cord as ‘foreign’ and damage it.
The clinical diagnosis of NMO can be assisted by MRI scans, lumbar puncture and a specific antibody called Aquaporin-4 antibody (also called NMOIgG) present in up to 80% of those affected.

Pain in NMO

Often caused by transverse myelitis (NMO attack on the spinal cord).
Three main types of pains, each with a different cause in NMO.

1) Neuropathic (nerve) pain
2) Nociceptive (musculoskeletal) pain
3) Increased muscle tone and spasms

The importance of pain assessment focuses on key areas:
1) Location of pain.
2) Description of pain.
3) Severity of pain.
4) Effects of the pain (i.e. on daily living).

Helping us to guide treatment:
– Keep a diary of your pain.
– Be completely honest with your healthcare professional.
– Low mood can have a significant impact on pain.
Stick as closely to prescribed medication as possible

Relapse Management

What is a relapse?
A relapse, or an ‘attack’ of NMO, occurs when there is new active inflammation within the nervous system.  This inflammation causes people to experience new neurological symptoms.
What should I do if I think I’m having a relapse?
If you experience any of the symptoms described above, or if you have any other new symptoms that are worrying you then it is important to contact your NMO nurse or doctor as soon as possible.  It is very important that you are assessed quickly during a relapse, as early treatment helps to prevent long term, irreversible damage.

Using MRI to explore Brain and Spinal Cord in NMO

Research study on MRI images to gain information about the structure and chemical content in the brain, and imaging characteristics of people with NMO

Visual Problems in NMO

Visual problems are common in Neuromyelitis Optica and mainly due to inflammation affecting the optic nerve. The optic nerve is the cable transmitting electrical signals from the light sensitive inner layer at the back of the eye (called the retina) toward the vision area of the brain.
Low vision services
• Patients with visual impairment = vision not improved with spectacles or contact lenses.
• Low Vision Clinic service available to maximise use of remaining vision by making assessments and suggesting adjustments and recommending low vision aids.
• You do not have to be registered as visually impaired to access this service.

In the afternoon,  three separate group discussions

1) People with NMO, 2) Partners and friends 3) Parents with NMO children
All groups discussed aspects, worries and concerns of living with NMO.

 

Future Event

In Autumn there will be a session for the different groups with the purpose: To improve the psychological care of people with NMO and their families through better self-management.
1. To improve the evidence-base of the cognitive problems reported by people with NMO.
2. To better understand the key psychological experiences of people following a diagnosis of NMO.
3. To understand the psychological difficulties affecting family members.

If you would like to be involved with this event please contact Leah White NMO Co-ordinator tel 0151 529 5970 or nmo.advice@thewalton centre.nhs.uk