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.
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.
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.
MG can be treated with drugs, surgery and other therapies – alone or in combination. Treatment decisions take into account the severity of your disease, which muscles are affected, your age, and other associated medical problems.
The goal of MG treatment is to remove antibodies, reduce antibodies, and inhibit the binding of antibodies through the various medications and treatments available.
There is no known cure for MG, but there are effective treatments that allow many people with MG to lead fulfilling lives. Common treatments include medications such as Mestinon® (pyridostigmine), immuno-suppressants including corticosteroids, Cellcept® (mycophenolate mofetil), Imuran® (azathioprine), cyclosporine, methotrexate, cyclophosamide, Rituximab and treatments such as thymectomy, plasmapheresis, and intravenous immunoglobulin (IVIg) infusions. Spontaneous improvement and even remission may occur without specific therapy. Rest and a well-balanced diet can help.
Please see Pages 11-17 of the Information booklet for additional explanation of these drugs and treatments.
The thymus gland lies in the chest area beneath the breastbone and plays an important role in forming the body’s normal immune system during childhood. The gland is composed of two main lobes and is shaped like a butterfly over the windpipe. It is somewhat large in infants, grows gradually until puberty, and then gets smaller and is replaced by fatty tissue as a person ages. In some adults with myasthenia gravis, the thymus gland is abnormal and remains large and active.
The relationship between the thymus gland and myasthenia gravis is not yet fully understood. Scientists believe the thymus gland may give incorrect instructions to developing immune cells, resulting in the production of unwanted antibodies.
Some people with MG develop ‘thymomas’ or tumours on the thymus gland. Generally, thymomas are benign, but in rare cases they can become malignant. When a thymoma is discovered, surgery is performed.
Surgery can be performed in several ways. The surgeon will discuss the optimal method to be used. An open chest incision may be recommended for good access or an endoscopic method which has an easier recovery period may be suitable. Some centres can now offer robotic surgery for this procedure. Reference page 14 of the Information booklet.
A longitudinal research project conducted in the United Kingdom with papers published in 2017 indicates that thymectomy is helpful in reducing required treatment levels. It did not highlight an increased rate of remission. It suggested that if thymic tissue is present, removal may be considered in patients up to 60 years of age.
MG results from abnormal immune system activity. Individuals with other auto-immune diseases or an abnormal thymus gland are more likely to have MG. Physicians suspect there may be a combination of factors that trigger the onset of MG symptoms in a susceptible individual such as an infection, other illness, extreme stress.
A genetic predisposition to autoimmune diseases can run in families, but MG is not thought to be directly hereditary. Researchers do not believe that it is contagious.
There is a 12% to 20% incidence of neonatal myasthenia in infants born to mothers with MG. Neonatal myasthenia is a temporary condition of general weakness in a baby and usually occurs within the first 24 to 48 hours after birth and may last days or weeks. It is usually self-limited, lasting three to five weeks, but occasionally lasts longer.
A less common form of Myasthenia gravis is Congenital Myasthenia. This inherited fault makes the junction weak but it is not an auto-immune issue. People are born with this condition though presentation may occur as late as adulthood.
Further details about these treatments can be found in the Information booklet, pages 11, 12 and 13.
In some cases, MG may go into remission for a time, during which no treatment is necessary. Remission is considered to a have occurred if treatment levels cause a patient to be symptom-free.
It is not generally thought that MG can be cured, but it can be treated. Many people with MG can live fairly normal lives. The first one to three years, when various symptoms appear, are often the most difficult. It can take time to work through various treatments to find what works best for you.
MG is called the ‘snowflake disease’ because its symptoms differ for every patient. Symptoms come and go, and periods of remission, when you are symptom-free, are possible. However, there is no way to predict if you’ll achieve remission or how long it will last.
The short answer is this: Exercise within your limits is absolutely recommended. Don’t exercise if you’re weak. Short sessions with breaks are better tolerated than longer sessions.
Start slow with walking or using an elliptical machine and build gradually as you become stronger. Stop and rest as soon as you feel tired. Have another person with you or bring a mobile phone, in case you run into trouble. It’s important to stop short of muscle fatigue. This point will vary from person to person depending on age, overall fitness level, MG symptoms and other factors. Be careful not to drain reserves of energy as this will delay your recovery time.
Because your symptoms can vary so much from day to day, it’s important to talk with your doctor about how and when to exercise. Together you can set up guidelines on how much exercise is healthy for you and under what circumstances you should attempt it. Working with a trained physiotherapist who can look into the efficiency of your movements and adjust activities according to daily energy levels should be considered. Focusing on muscle groups which bring stability, good posture and flexibility to the body can be just a useful as gaining additional strength.
The MGAQ have useful resources on exercise. These are available to members via the Lending Library.
MGAQ cannot provide referrals for liability reasons. In general, we suggest that people see a neurologist who focuses on neuromuscular conditions. Your GP will help you with this process.
Myasthenia gravis does not affect the normal growth and development of the foetus. Many women with MG have successful pregnancies.
This partially depends on the nature of your job and your MG, but many MG patients continue working successfully in some capacity.
There are certain drugs that people with MG should avoid or only use with caution.
These are drugs known to make MG symptoms worse, including certain antibiotics, beta blockers, anti-arrhythmic drugs, calcium channel blockers, some cholesterol lowering medications, anti-rheumatics such as quinine, potentially some anti-convulsant, psychiatric and anti-spasmodic medications, general anaesthetics and muscle relaxants, plus magnesium products. Botulinum toxin is not recommended and live vaccinations, some X-Ray contrast mediums and narcotics should be used with caution. You should always discuss these concerns with your doctor or neurologist who will then evaluate the management required.
Do make sure these professionals know every drug you are taking, including over-the-counter medications and nutritional supplements. Your pharmacist may be another good resource.
For more information on drugs MG patients should avoid or only use with caution refer to the Information Booklet pages 17 and 18.
Be sure to check with your primary MG doctor before taking any new medication, even over-the-counter drugs.
These factors can make your MG symptoms temporarily worse: infection, stress, lack of sleep, illness, overexertion, pain, extreme hot or cold (including outdoor temperatures, hot showers or baths, saunas, hot tubs, hot foods or beverages), some medications (see questions about medications), anaesthetics both local and generalised, and some chemicals (for instance, insecticides and lawn treatments).
Most significantly, the overuse of Mestinon can bring on the symptoms and can be dangerous. See question 16 about Myasthenic Crisis.
Treatment for MG includes self-care: getting plenty of sleep, resting your body and eyes during the day, and pacing your activities. It involves good nutrition, stress management, and exercise also.
You are the one who knows your body best so take the time to keep a diary and be aware of how your body responds to the varying influences occurring in your daily living. Find ways to relax and avoid stress. Know what constitutes the 'best rest'. For example, lying down can be much more effective than just sitting and results achieved more quickly.
A little bit of planning may allow you to make the most of your energies and have you enjoying life more. This helps you to cope with the ongoing symptoms of the myasthenia and improves your quality of life.
Asking for help, taking safety precautions in the home and when out and about, all improve your outcomes. Health professionals can help you work out which areas will be most helpful to you.
Myasthenia patients, like everyone, should eat a healthy diet and maintain a healthy weight. Extra pounds make it harder to get around and aggravate other diseases. Even when medications like prednisone increase your appetite, it’s essential to focus on a healthy diet with lots of fruit, vegetables, protein, whole grains and reasonable portions. Be conscious of any intolerances which may be inflaming the body and adding load to the immune system.
Generally, people find that the medications make them more sensitive to the effects of alcohol.
Avoid magnesium supplements unless prescribed and monitored by your doctor, since magnesium can worsen MG symptoms. Check with your neurologist before taking any supplements or alternative medications, including over-the-counter drugs, because they can affect your MG and interact in a bad way with other medications.
You and your family and friends can very much benefit from talking with others and participating in a support group. Here you will find an environment of understanding. See Question 17 for options made available to you.
The Association produces a book of stories which is insightful and helpful. It can be ordered online, by mail or members may borrow it from the Lending Library.
The MGAQ have a useful resource on exercise, available to members from our Lending Library.
(Information selected from the Hope Foundation website)
Only 20% will ever have a crisis – the most common cause is a chest infection. A myasthenic crisis occurs when the muscles that control breathing weaken to the point that ventilation is inadequate, creating a medical emergency and requiring a respirator for assisted ventilation. In individuals whose respiratory muscles are weak, crises – which general requires medical attention – may be triggered by infection, fever, or an adverse reaction to medication.
If a crisis is occurring, a most critical piece of information is the need to appropriately determine if your symptoms are due to Myasthenic or Cholinergic crisis.
Myasthenic crisis is disease induced. It is a by-product of the disease itself and can be exacerbated by underlying infection, uncontrolled/undiagnosed diseases that are flying under the radar or lack of appropriate medication regimen that allows the disease process to flare. (Please read on for additional details about a myasthenia crisis.)
Cholinergic crisis is a whole other animal that looks and acts VERY similarly to a Myasthenic crisis. The key difference here is that a Cholinergic crisis is induced ONLY by too much Mestinon. The best way to determine if you are having a Cholinergic crisis is to monitor your medication regimen. 30-60 minutes after taking your Mestinon, do you notice that you are experiencing:
- excessive salivation, mucous, bronchial secretions or tear production
- profuse sweating that can sometimes come with waves of chills
- pronounced muscular weakness that mimics not having enough Mestinon
- slurring of speech/difficulty talking or chewing
- dizziness and problems focusing your vision (miosis)
- feeling/acting inebriated
- losing urinary control
- muscle spasms/twitching
A Cholinergic crisis can quickly escalate into respiratory failure or compromise. Often, Cholinergic reactions begin with more mild symptoms. The more you take of the Mestinon in failure to recognize what is happening, the more you will build up and create a serious problem for yourself. If you are experiencing any of these symptoms, it is important to get prompt medical attention.
Myasthenic crisis is presented as a worsening of symptoms by an exacerbation of the disease itself whether it is from insufficient medication, an underlying infection or uncontrolled/untreated/undiagnosed medical condition that is playing a secondary role or trigger. Other triggers can include stress, lack of hydration and nutritional support, heat and contraindicated medications/therapies both synthetic and natural.
Myasthenic crisis MAY require additional Mestinon or an adjustment of your current dose as well as additional tertiary therapies until you return to baseline neurological function again.
SOME signs and symptoms of Myasthenic crisis includes the following:
- Cannot lay flat in bed without feeling short of breath or gasping for air
- Rapid shallow breathing (especially more than 25 breaths/minute)
- Having to pause in the middle of a sentence to take a breath
- Weak cough, especially when mucus/saliva cannot be cleared from the throat
- The muscles between the ribs and around the neck pull in during breathing
- Cannot count out loud past 20 after a full breath of air
- Waking up frequently during the night gasping for air
- Feeling restless, agitated, drowsy or confused
- The chest wall moves inward instead of expanding when air is inhaled
- Feeling too tired to keep breathing
Also included is difficulty chewing or swallowing/choking on saliva, difficulty holding your neck up or opening your hand fully (palm up), raspy or nasal speech, liquids being swallowed and being pushed back up into your nasal cavity and/or difficulty sitting/standing in brief spurts.
The first way to explore making contact with others it to download a copy of the newsletter and find the Association details plus a list of events, meet ups and chat list contact information. Call the 1800 802 568 number to speak with the Association's Information Officer. This phone is managed by someone who lives with Myasthenia and who represents the Association. Informative, supportive conversation is provided to sufferers, carers, relatives, friends, health professional and anyone with an interest in Myasthenia Gravis.
Information found in the newsletter will refer to the following: -
- Major Association meetings are held in Brisbane in both June and September each year. These meetings host a guest speaker as the more formal part of the day. The opportunity for a cuppa before and lunch afterwards allows for conversation, networking and friendship. Everyone is welcome to all events – members and non-members. Health professionals enjoy attending also.
- Less formal regional meetings occur regularly across Queensland. News of these meetings is shared in the newsletter. Again, non-members are always welcome.
- Relaxed and informal ‘Coffee & Chat’ opportunities occur regularly throughout Queensland and across broader Brisbane. See the newsletter or contact 1800 802 568 or your regional co-ordinator for more details. Non-members can attend without any obligation to join.
- Facebook Closed Discussion Group. The MGAQ operates a very active closed discussion group. You will need to contact the group administrator for access to this discussion group www.facebook.com/groups/mgqld/. Conversation is open to all in Australia. The group is engaged and very supportive.
- Some members are willing to take private phone calls and you will find their name and telephone details listed regularly throughout the year in the Chat List section of the newsletter.
Yes. The Myasthenia Gravis Association of Queensland produces a monthly newsletter with the exception of January. Members have the option to receive the newsletter by mail or receive an electronic version by email.
Latest events both at State and National level, items regarding research and pending conferences plus general sharing of news and support are included in this newsletter. It is a major form of communication and feedback suggests it is welcomed each month. MGAQ newsletters from the past several years can be found on the Website.
- 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.
Medical decisions should always be discussed with your doctor. As the flu shot is not a live vaccine, it is not strictly forbidden for people with MG; however, there may be some instances in which the vaccine is not advised.
Approximately 10-15 out of 100,000 individuals in Australia have been diagnosed with MG. However, MG is considered under-diagnosed and the prevalence is thought to be much higher. Myasthenia Gravis is considered a Rare Disease.
The most common age at onset is the second and third decades in women and the seventh and eighth decades in men. As the population ages, the statistical average age at onset increases correspondingly; with males now more often affected than females.
Many myasthenia patients make a personal decision to wear medical alert jewellery such as a bracelet or necklace. At minimum, a medication card in your wallet or purse should clearly indicate “Myasthenia Gravis” and include your name, date of birth, a family member telephone number, MG doctor, and medical conditions.
Members of the Association may request a Medi-Alert card for inclusion in their wallets. It is a very handy tool for your doctor to have a short list of drugs to be used with care.
Whether travelling domestically or internationally it is very important to be prepared for any eventuality. You will be away from your regular doctors. Having some form of medical alert warning on or close to you is recommended.
Also, ask your GP for a letter outlining and verifying your diagnosis, current treatments, medications and supplements plus suitability to travel including any support that may need to be requested. Carry a few copies distributed in your wallet and through your luggage. Include details for contacting the Doctors who care for you.
Take ALL medications in sufficient quantities to cover an unexpected extension of your travel plans.
Carry ALL medications and supplements in their original packaging. Prescription medication should be labelled with the prescription labels supplied by the chemist.
Carry Doctor approved supporting medications such as antibiotics, inhalers, nausea or diarrhoea treatments, creams etc that you may need should unusual circumstances arise along with detailed instructions regarding when to use them.
Investigate your suitability to receive any recommended vaccinations and have these well in advance of departure.
Investigate Travel Insurance options even for travel within Australia. It is important to carefully consider the risks involved if you plan to travel without cover.
Something to keep in mind is Australia’s Reciprocal Health Care Agreements with a number of other countries. More information, including a list of these countries can be found on the Department of Human Services Website. Countries Australia has an agreement with include Belgium, Finland, Italy, Malta, the Netherlands, New Zealand, Norway, the Republic of Ireland, Slovenia, Sweden and the United Kingdom. If you live in Australia you can get help with costs for medically necessary care when you visit any of those countries. This includes: Emergency Care and Care for an illness or injury that can’t wait till you get home.
For more information, visit: www.humanservices.gov.au/individuals/enablers/about-reciprocal-health-care-agreements
Preparing for your appointment:
You're likely to start by first seeing your general practitioner who is then likely to refer you to a Specialist such as a Neurologist for further evaluation and regular monitoring.
Because there's often a lot to talk about at your appointments with Doctor, it's a good idea to be well-prepared for each appointment.
Here's some information to help you get ready for these appointments.
Write down symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
Keep a diary of symptoms experienced, activity levels, medications taken and results experienced. Make a summary of what has occurred since your last visit.
Bring a list of all medications, vitamins or supplements that you're taking.
Write down questions to ask your doctor. Your time with your doctor is limited, so preparing a list of questions ahead of time will help you make the most of your time together. List your questions from most important to least important in case time runs out. For myasthenia gravis, some basic questions to ask your doctor include:
- Other than the most likely cause, what are other possible causes for my symptoms?
- What kinds of tests do I need?
- What is the most appropriate course of action?
- How long will I feel this way?
- What are my choices in treatment options and how long until I can expect results from these various treatments? What side effects might I expect?
- Are there any restrictions that I need to follow? What shouldn’t I do?
- Is support from any Allied Health Professional (eg physiotherapist, speech pathologist, dietitian, social worker, counsellor) going to be helpful?
- Are there any brochures or other printed material that I can take home with me? What websites do you recommend visiting?
Importantly, in addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment at any time that you don't understand something.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:
- When did you first begin experiencing symptoms?
- Have your symptoms been continuous or occasional?
- How severe are your symptoms?
- What, if anything, seems to improve your symptoms?