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About MG

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, which may be intermittent, 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 Inc. (MGAQ) produces and distributes hardcopy information that is available to everyone.  This website offers a range of opportunities presented in a variety of formats, to better understand this condition, it’s treatment options and what can be done to live with this condition. 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.

Raising your questions directly with your Neurologist is also important.

'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. Journal Articles resulting from local 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?

  • 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.  This may be discussed in terms of a Mestinon challenge.
  • 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.

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

What causes MG?

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.

Will my MG go away?

In some cases, MG may go into remission for a time, during which no treatment is necessary. Remission is considered to 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 satisfying lives and experience normal life spans. 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.

What is a Myasthenia and/or a Cholinergic crisis?

(Information selected from the Hope Foundation website)

Only 20% of sufferers will ever have a crisis – the most common cause is a chest infection. A myasthenia crisis occurs when the muscles that control breathing weaken to the point that breathing is inadequate, creating a medical emergency and requiring a ventilator for assistance. In individuals whose respiratory muscles are weak, crises – which require 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 a Myasthenia Gravis exacerbation or a Cholinergic crisis.

A Myasthenia Gravis exacerbation 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 Myasthenia 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
  • Muscle spasms/twitching
  • Profuse sweating that can sometimes come with waves of chills
  • Vomiting/diarrhoea
  • 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

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.

A Myasthenia 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.

A Myasthenia Gravis Exacerbation 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 Myasthenia crisis include 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 head and neck up or opening your hand fully (palm up), raspy, soft or nasal speech, liquids being swallowed and being pushed back up into your nasal cavity and/or difficulty sitting/standing in brief spurts.

Can my Mental Health be affected after being diagnosed with Myasthenia Gravis?

(Response provided by Dr. Angelo Contarino – Clinical Psychologist)

Individuals with Myasthenia Gravis (MG) commonly experience a broad spectrum of emotional symptoms from appropriate emotional reactions (e.g., grief including associated sadness, irritability/anger) to mental health (MH) disorders. These occur secondary to their chronic autoimmune disease. The most common include – Adjustment disorder, Mood disorders such as Depression, Panic and Generalised Anxiety disorders. In fact, MG often results in a large amount of stress, which can increase the risk of developing these MH problems. Of note, treatment of MG with corticosteroids has also been linked with increased depression and anxiety features.

What can I do if I experience Mental Health symptoms?

(Response provided by Dr. Angelo Contarino – Clinical Psychologist)

If those with MG or their carers recognise they are experiencing difficult emotional symptoms or MH problems, it is recommended they attend their GP for a referral to obtain treatment with appropriately qualified medical specialists and/or MH professionals (e.g., psychiatrists and psychologists). Remember certain medications commonly used in the treatment of MH disorders cannot be used with those diagnosed with MG (due to adverse reactions). However, effective medical consultations and engagement in therapy are likely to improve the overall wellbeing of those with MG.

Is excessive fatigue a part of Myasthenia Gravis?

(Response provided by Dr. Angelo Contarino – Clinical Psychologist)

Fatigue is a complex phenomenon and includes both physiological and psychological factors. In recent years a distinction has been made between fatigue as a subjective feeling of tiredness, lack of energy, and difficulty concentrating, and muscle fatigability defined as the difficulty initiating or sustaining muscle activities. Chronic fatigue is commonly defined as fatigue above a certain level lasting for 6 months or more. Persistent fatigue of this type has been studied extensively in the Chronic Fatigue Syndrome (CFS) and in some other chronic diseases. Chronic fatigue in some individuals with MG has been demonstrated to be comparable in intensity and duration to individuals with CFS. Fatigue has generally been under-recognised in MG patients. In the absence of an objective evaluation of disease severity, assessment of fatigue has often been based on the individual’s perspective of their symptoms and a clinical examination. Autonomic (1) symptoms, especially thermoregulatory (2), sleep disorders and fatigue should be taken more seriously than they usually are in people with MG. Fatigue could be misinterpreted as myasthenia weakness and trigger a negative spiral, (i.e., overmedication, which could in turn aggravate more fatigue). Fatigue is a considerable problem in MG even with individuals who are in full remission and not taking medication. MG severity is highly suggestive to be associated with symptoms of autonomic disturbance, which in turn are associated with total fatigue level and functional disability.

(1) Autonomic definition: Involuntary, often refers to Autonomic nervous system which regulates involuntary functions of the body.

(2) Thermoregulatory definition: the ability to regulate temperature. The ability of the body to maintain a constant temperature independent of the environmental temperature.

Does Myasthenia Gravis cause problems with Short term memory and Brain Fog?

(Response provided by Dr. Angelo Contarino – Clinical Psychologist)

Decreased cholinergic (3) activity in MG can result in short-term memory loss, cognitive fog (confusion/lack of clarity in thinking), generally reduced cognitive performance, linguistic and comprehension changes. In fact, individuals with MG can often perform worse on delayed recall, memory and verbal learning tasks. This can alarm many individuals who are not sure if this is because of their MG or something else (e.g., dementia). Certain treatments for MG can also cause similar symptoms. It is important for individuals with MG, their carers and medical/therapy service providers to look at the constellation of symptoms in order to determine if the symptoms are MG related or something else. Brain fog and short-term memory loss in MG comes and goes, is worse during periods of flares and can have a sudden appearance in contrast to other conditions. These reactions vary from one individual to another and clearly fluctuate depending upon their mental and physical health.

(3) Cholinergic definition: Activates by or involves Acetylcholine or mimics the action of Acetylcholine.

Are Pain and Cramps symptoms of Myasthenia Gravis?

(Response provided by Dr. Angelo Contarino – Clinical Psychologist)

MG is a neuromuscular condition that deteriorates the communication between nerve cells and muscles. Some studies have indicated that up to 54.3% of those diagnosed with MG experience muscle cramps and pain. Current understanding suggests that MG itself does not directly cause the pain, but the weakness and fatigue associated with MG may lead to secondary non-specific aches and pains. For instance, neck pain may occur because of weakness in the neck muscles. A combination therapy of high-dose cholinesterase inhibitors (7), such as Mestinon can also increase the chances of muscle cramps (particularly in the stomach) of those with MG, thereby reducing their quality of life. Seek medical advice and/or psychological therapy if experiencing cramps or pain. Complimentary therapies such as remedial massage might also prove useful. 

(7) Cholinesterase inhibitors definition: An agent that inhibits the breakdown of Acetylcholine.

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