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Journey with Myasthenia Gravis

Journey with Myasthenia Gravis

A Book of Personal Stories, written by Sarah-Jane Fleer and produced by the Myasthenia Gravis Association of Queensland Inc.

Now available for purchase through our online store.

Our Work

Our Work

  • Member Welfare - Freecall number, Information, Gatherings
  • Advocacy - National Alliance
  • Awareness - Providing speakers, Distribution of Materials.
  • Research Promotion - Patient Survey, Database Collection, Economic Impact Study, Exercise Effects in MG
Supporting One Another

Supporting One Another

We need your support to raise awareness of Myasthenia Gravis in the Community.

Taking up membership either as a sufferer, carer or interested supporter is a great way to help.

What is Myasthenia Gravis?

What is Myasthenia Gravis?

Myasthenia Gravis is characterized by weakness and rapid fatigue of any of the muscles under your voluntary control.

Myasthenia Gravis is caused by a breakdown in the normal communication between nerves and muscles.

(Definition courtesy of the Mayo Clinic)

MG Survey Updates

Click here to get the latest information on the MG Survey being conducted through the University of Queensland.

Frequently Asked Questions

What is Myasthenia Gravis and what are common symptoms?

Myasthenia Gravis (MG) is an autoimmune neuromuscular disorder that affects voluntary muscles. It may be Ocular or Generalised in origin. More types of Myasthenia are being identified. Each type has particular treatment pathways. Common symptoms can include a drooping eyelid, blurred or double vision, slurred speech, difficulty chewing and swallowing, weakness in the arms and legs, chronic muscle fatigue and difficulty breathing. The weakness tends to increase with continued activity and can be improved with periods of rest. Not everyone will display all symptoms, and symptoms can fluctuate.

What do I do? I think I have MG.

We can provide you with general information regarding MG, but you should consult with your doctor if you think you have MG. Request an information packet by calling Freecall 1800 802 568 or email info@mgaq.org.au. Visit the "resources' section of this website and view the information booklet.

Where can I get more information on MG?

The Myasthenia Gravis Association of Queensland (MGAQ) produces and distributes information pamphlets which are available to everyone. These materials describe various aspects of the illness, information on treatment programmes and a number of other topics. You may download and print our materials. If you have difficulty downloading and printing, request a package online and we will send it via mail to people within Australia. Please allow two weeks for delivery.

'Developing news' and 'Latest research information' currently in focus with the Association, is best resourced through the Association newsletter and guest speaker presentations. The newsletter can be received by registering on this site and by accessing the newsletter archives contained on the home page. Members are automatically sent the newsletter and can chose to have it delivered in hardcopy. Members only, have access to the guest speaker presentations. Also, papers resulting from research can be viewed through the Resources section of this website.

For a more informal source of information, an active Closed Group Facebook Discussion page is offered to Australian residents.

How does the Doctor test for MG?

A diagnosis can be confirmed in several ways, including the following:

  • Acetylcholine Receptor Antibody – A blood test for the abnormal antibodies can be performed to see if they are present. Approximately 80% of MG patients have this antibody and, when detected with an elevated concentration, the AChR antibody test is strongly indicative of MG.
  • Anti-MuSK Antibody testing – A blood test for the remaining 20% of MG patients who have tested negative for the acetylcholine antibody. These patients have seronegative (SN) MG. About 40% of patients with SNMG test positive for the anti-MuSK antibody. The remaining patients have unidentified antibodies causing their MG.
  • Anti-lipoprotein-related protein 4 (LPR4) antibody – A further test may be ordered for patients who test negative to both the above tests. The incidence of a positive test varies but it is not high.
  • CT Scan of the chest – This will look for evidence of thymic tissue.
  • Muscle Fatigue Test – Your doctor may ask you to perform repetitive exercises during the examination.
  • Tensilon Test – Not used very often. Edrophnium, a short acting cousin of Mestinon, is injected into the worst affected areas of muscle. Strength is measured before and after the injection. The drug can cause an allergic reaction so this test is usually done in a hospital setting. Alternatively, the patient's general improvement on anti-cholinesterase drug treatment can be useful supporting evidence.
  • Ice Test – Cold can reverse the effects of the myasthenia. Research is underway to formalise a protocol using ice as a reliable marker.
  • Electromyography – (EMG) studies can provide support for the diagnosis of MG when characteristic patterns are present. Repetitive Nerve Stimulation is used to check for a pattern of response that is characteristic of MG.
  • Single Fiber EMG – studies can provide support for the diagnosis of MG when characteristic patterns are present. The single fiber EMG and AChR antibody test are primary tests used to confirm a clinical diagnosis of MG.

Sometimes all of these tests are negative or ambiguous in someone whose story and examination still seem to point to a diagnosis of MG. A clinician skilled in recognising MG and distinguishing MG from other conditions would need to determine if such a patient has MG or another disorder.

Please refer to the Information Booklet page 9 for more information.

What parts of this website are especially useful?
  • The Resources section where much of the MG information is accessed or highlighted
  • The Lending Library for books and copies of past presentations
  • The Newsletter Archive brings a wealth of news and events plus ways for you to participate in current research projects
  • The Facebook Closed Discussion Group for support
  • The 'Journey with Myasthenia Gravis' book gives handy tips to family and friends whilst highlighting just how varied life with myasthenia can be
  • Making Payments online for your convenience
  • Follow latest research news with reports and updates
  • Use the 1800 802 568 Freecall number to reach the Information Officer, attend to general admin services and access hardcopy resources.

Who are we and what are our objectives?

The objectives of the Association are to be a support group for sufferers of Myasthenia Gravis (MG), and to raise awareness of MG and raise funds for research into MG.

Formed in 1991 we have been recognized by QUEENSLAND HEALTH as the peak body for MYASTHENICS in Queensland. We are an Incorporated Association (IA10040) and a Registered Charity (CH1212), and our ABN is 92 055 613 137.

Myasthenia Gravis Association of Queensland Inc. Celebrating 27 Years
Our Mission is to improve the quality of life for people with Myasthenia Gravis and for their families.
Supported by the Queensland Government
Supported by the Queensland Government