What is Multiple Sclerosis?

Multiple Sclerosis (MS) is a chronic progressive disease where the nerve fibres in the brain and spinal cord become damaged. Inflammation occurs around these nerves and damages the myelin that surrounds the nerves. This myelin is contained in a sheath that is a wrapping around the nerves and allows the electrical impulses to be conducted along the nerve fibres accurately and quickly. When the myelin is damaged, the conduction of the impulses slows down and this can cause symptoms to occur affecting the person’s sight, movement, balance, and other physical functions.

If you would like more information on MS, please contact the MS Nurses on 9895 4914.

The MS Clinical and Research Unit

The Box Hill Hospital Multiple Sclerosis (MS) Clinical and Research Unit provides a service to people with MS. The service aims to:

• provide health care that is focused on the patient and family
• strive for excellence, innovation and collaboration in all aspects of care, research and education we deliver
• provide access to the most current MS information, research and treatments

Through programs and practices that focus of self-management with effective coaching, support and follow up from our team, we hope to achieve improved health outcomes for all those we care for.

In early 2006, the MS Unit formalised their collaborative relationship with Eastern Clinical Research Unit / Monash University to enhance the participation and development of research within the unit.

Who we are

The MS Unit team are:

• Dr Helmut Butzkueven, Director of the MS Clinical and Research Unit

Dr Helmut Butzkueven is a leading MS Specialist Neurologist in Australia and Internationally. Dr Butzkueven combines working both at Royal Melbourne Hospital and Box Hill Hospital as MS Neurologist with his role as a scientist at Howard Florey Institute.

• Dr Olga Skibina, MS Neurologist

Dr Olga Skibina is an MS Specialist Neurologist who is currently involved in scientific endeavours and research projects at the Howard Florey Institute, as well as holding clinics for MS patients at Royal Melbourne Hospital, Box Hill Hospital and Maroondah Hospital.

• Dr Mark Marriott, MS Neurologist

Dr Mark Marriott is an MS Specialist Neurologist who is currently involved in scientific endeavours and research projects at the Howard Florey Institute, as well as holding clinics for MS patients at Royal Melbourne Hospital and Box Hill Hospital. Dr Marriott has a long established relationship with Box Hill Hospital dating back to 1992 when he was a medical student prior to specialist training at Box Hill, Austin and Royal Melbourne Hospitals.

• Anne Pieris – Research and Administration

Anne is involved in administration of the unit and as a supportive role in clinical research trials. Anne is the contact person for all appointments and any queries regarding the MS Unit.

• Jodi Haartsen and KJ Chong - MS Nurse Consultants

The MS Nurses have an active role in therapy programs, research and education, patient and family care at clinic, management and leadership activities.

The MS Nurses provide a 24 hour on-call service to ensure that patients concerns, questions and needs are attended to promptly.

The MS Nurses have developed many strategic and collaborative relationships within the local community and beyond to ensure that care is given in partnership with other health care providers.

Research

The MS Clinical and Research Unit is a part of the Eastern Clinical Research Unit, Monash University and recognized internationally as providing excellence in conducting clinical trials. We are also in partnership with the MS Unit at Royal Melbourne Hospital and collaborate with them on a number of research studies.

We are currently involved in both pharmaceutical company sponsored clinical trials and non-pharmaceutical trials. These studies investigate various aspects of MS treatment and Care. The studies are all conducted at Box Hill Hospital by members of the MS Unit team.

If you have an interest in Research please contact KJ Chong, study nurse co-ordinator on 9895 0390 Mon-Fri.

MS Base

The MSBase Registry is a free tool for electronic data collection, substudy management and online research investigator collaboration. The platform provides a fully customisable substudy functionality and electronic case report form to allow for the collection of data for studies of MS regionally, nationally and globally. The World Wide Web is used for communication and data sharing whilst assuring investigators retain ownership of anonymised data.

This tool for clinical outcomes research can be used by:

• Centres wishing to conduct studies of MS
• Centres wishing to contribute to the dissemination of data in MS
• Organisations conducting studies of MS

As of July 2006, the registry has over 4200 patient records databased from anonymised electronic medical records in MS clinics in 13 countries. Close to 70 research centres are involved in the project.

Contact www.msbase.org

Therapy Programs

Relapse Management

What is a relapse (or attack, exacerbation or episode)?

An MS Relapse – also known as an acute attack or an exacerbation is defined as an episode of new or worsening MS Symptoms that lasts more than 48 hours. Typically, an acute relapse tends to progress over a few days, reaching its peak within a week or two, and then slowly resolves. Relapses often lead to a change in your ability to function in your day to day living, and it may take as long as 1 to 6 months to get better. Usually, you will recover completely, although occasionally some residual symptoms may remain.

When is it unlikely to be a relapse?

Every person with MS has PAROXYSMAL SYMPTOMS. Paroxysmal means random in occurrence and short in duration, for example, a minute, an hour or a day.

Paroxysmal symptoms typically occur when you are exercising strenuously, tired, run down, or have any kind of fever or an infection such as a cold or a urinary tract infection. The key difference to relapses is that they resolve quickly and do not worsen from day to day over several days.

Some common examples include:

• shooting pains in the limbs or face
• squeezing, expanding, tingling or burning sensations in the feet, hands or trunk
• blurred or double vision
• fatigue
• altered taste
• sudden loss of strength lasting seconds (for example in a leg), rapidly recovering in seconds/minutes

The best treatment for these symptoms is rest and, if appropriate, treating any potential infection. If the symptoms worry you, are new to you and/or occurring frequently, seek our help and advice immediately.

What can trigger a relapse?

Most of the time, relapses occur randomly. Sometimes relapses can follow a challenge to your immune system, such as a viral infection (cold, flu, gastroenteritis) or an immunisation, but most relapses simply cannot be explained.

Common treatments for Relapses

Patients having an MS Relapses are most commonly treated with a short course of medications called Corticosteroids. These can be given in tablet form or via an intravenous drip for 3 to 5 days. The medication given by an intravenous infusion (Methylprednisolone sodium succinate) is the most popular as it has been shown to have the most rapid effect with the most tolerable side effects.

Relapses do get better if not treated, however treatment has shown to dramatically speed up this recovery in most cases. Even with treatment, it may take up to a month (and sometimes longer), for a person to recover from a relapse. In general terms, methylprednisolone seems to work more effectively for eye nerve inflammation (optic neuritis) and brainstem attacks (double vision, dizziness, unsteadiness) than for transverse myelitis (changes in sensation such as numbness and pins and needles in your limbs).

How your medication works

Methylprednisolone belongs to a group of medicines called corticosteroids. Methylprednisolone acts in the body by altering the immune system and reducing the inflammation which is occurring during an MS Relapse.

Methylprednisolone has been shown in MS to be the most effective way of reducing the severity and duration of an MS relapse and speed up the rate of the recovery. Unfortunately Methylprednisolone will not improve the eventual outcome of the relapses and the progression of MS, the relapse symptoms will just get better faster and certainly stop getting worse if we use Methylprednisolone.

Before you start treatment with Methylprednisolone

Tell your doctor if:

1. You are allergic to any other medicines or any other substances such as foods, preservatives or dyes
   
2. You have or have had any of the following conditions:
   • stomach ulcers
   • heart disease
   • thin or weak bones, (osteoporosis)
   • high blood pressure (hypertension)
   • kidney or liver disease
   • underactive thyroid gland
   • mental disorder, especially sever depression, manic depression or a past history of psychosis
   • myasthenia gravis (ongoing chronic fatigue and muscle weakness)
   • tuberculosis (TB)
   • herpes simplex of the eye
   • ulcerative colitis (disease of the bowel

Tell your doctor if you are taking any other medicines, including medicines that you buy without a prescription from a pharmacy, supermarket or health food shop.

Methylprednisolone has no effect on most treatments used for specifically MS such as Betaferon®, Copaxone®, Rebif® or Avonex®. You may continue to take these medications.

How will the treatment be given

At Box Hill Hospital, usually the first dose of your Methylprednisolone will be given in the Day Procedures Unit on Ward One North. The next doses you have, where possible, will be given to you at home by the Hospital in the Home Service.

On your first day in Ward One North, you will be shown where admission is and they will have a short interview with you. You will then be taken to a comfortable chair and an intravenous drip will be inserted (this requires a needle). This drip will stay in your arm for the three days of your treatment. You will be shown by the nurses how to take care of this. This first dose takes about 2 to 3 hours. We recommend that you have someone to drive you to the appointment and pick you up if it is the first time you are having the treatment, although you are able to drive as the medication does not cause drowsiness.

The Hospital in the Home Nurses will come and see you while you are on the ward and make arrangements for a time to come and visit you in your home and explain what they will be doing. The visit in the home takes about an hour and a half.

In some cases, there may be a reason you are not able to receive the treatment at home and therefore need to have it in hospital.

The common side effects of Methylprednisolone

Check with your nurse or doctor as soon as possible if you have any concerns during a course of treatment with Methylprednisolone, even if you do not think the concerns are connected with the medicine.

Methylprednisolone may have unwanted side effects in a few people. Sometimes they are serious, most of the time they are not. You may need medical treatment if you get some of the side effects.

Do not be alarmed by this list of possible side effects. You may not experience any of them.

Tell your nurse or doctor if you notice any of the following and they worry you:

• fluid retention (causes an increase in weight)
• increased sweating
• headache or dizziness
• changes in your menstrual periods
• mood changes
• nausea and vomiting
• itchy skin
• facial redness
• persistent hiccups

Immediately seek medical treatment at your doctors or the Emergency Department at you nearest Hospital if you experience

• Chest pain or palpitations
• Signs of frequent infections such as fever, severe chills, sore throat or mouth ulcers
• Allergic-type reactions, e.g. skin rash, itching and difficulty breathing, wheezing or coughing (anaphylactic reactions)
• Severe stomach pains
• Convulsions or fits
• Blurred vision or loss of vision

This is not a complete list of all possible side effects. Some people may get other side effects while being treated with Methylprednisolone. It is very important to tell your nurse or doctor if you notice any side effects during a course of treatment with Methylprednisolone.

Follow up

After a relapse you will be followed up at the MS Clinic by the Neurologist and / or MS Nurse within one to two months.

It is important that you also keep in touch with your local doctor (GP).
If you have any concerns it is important to contact your local GP or the Nurse at the MS Clinic on 9895 4914.

If you require urgent medical attention you should call an ambulance on 000 or contact Box Hill Hospital on 9895 333.

Immunotherapy Program

There are certain drugs available that modify the course of MS by reducing the number and severity of relapses. These drugs are often called immunotherapy drugs. Immunotherapy is an important aspect in the life of many people with MS. These medications act by regulating the immune system and have shown positive results in drug treatment trials of MS.

Immunotherapies available are:

• Interferon Beta 1b (Betaferon®)
• Interferon 1a (Avonex®, Rebif®) and
• Glatiramer Acetate (Copaxone®)

These immunotherapy treatments are given intramuscularly (into the muscle) or subcutaneously (under the skin).

Commencing on these medications is the start of a challenging journey for many people with MS. The MS Nurse Consultants are available to provide information and training and encouragement and support as they embark on this journey and continue to provide this ongoing service. The MS Nurses spend time with people tailoring a programme that will specifically look at each individual’s needs and wants, and work with them to get the best outcomes.

The MS Nurses will take time consider the many ways in which these medications impact upon a persons lifestyle and work with that person to find the best solutions which give them the freedom and control to do what they want to do to live life to the fullest. Part of this important goal has been the development of a travel brochure to assist people in planning for travel trips, with particular focus on travelling with medications. This travel brochure is available in PDF form attached to this site.

If you have any questions about immunotherapy treatment, please call the MS Unit and a Nurse consultant will speak to you about any of your concerns or idea’s about how to make things better for everyone.
 

Newsletters

Issue 1 - Summer 2006   (* PDF file 217 kB)

Issue 2 - Winter 2006   (* PDF file 396 kB)

Contact

Jodi Haartsen    Phone 9895 4914