Before we discuss how to share awareness for Myasthenia Gravis and support friends and loved ones going through a myasthenia gravis diagnosis, it’s important for your to understand what myasthenia gravis is and what your friend or loved one may be going through.
What is Myasthenia Gravis?
Myasthenia gravis is a Latin word that means “muscle weakness”.
Myasthenia gravis is either an Autoimmune disease (when your own body’s defense system starts destroying your muscle by making antibodies against your muscle) or a Congenital Neuromuscular disease (a defect between the nerve terminal chemical and muscle) that leads to muscle weakness and fatigue.
What happens in Myasthenia Gravis?
What happens in Myasthenia Gravis disease depends on whether the version of the Myasthenia Gravis disease is Congenital (by birth) or Autoimmune (mostly appearing in adulthood).
Congenital myasthenic syndrome (CMS): is a group of conditions caused by an inherited disorder in which muscle weakness typically begins in early childhood.
Autoimmune Myasthenia gravis: muscle weakness typically begins in adulthood.
What are the causes of Myasthenia Gravis?
Myasthenia gravis is caused by antibodies (that normally fight against infections) begin attacking the communications system between your nerve and your muscle. Overproduction of antibodies by your own immune system. These antibodies then bind to the muscle receptor (Nicotinic Receptor). Which causes accelerated degradation of the receptor and blockage of acetylcholine binding to these receptors present on your muscle. Acetylcholine is a chemical that is produced by your nerves’ terminal and helps the muscles to move.
Acetylcholine is an important neuron chemical that plays an important role in the communication between your nerves and muscles and helps your muscle to move.
This effect causes accelerated degradation of the receptor and blockade of acetylcholine binding to receptors on muscle end plates.
What are the types of Myasthenia Gravis?
There are two main types of myasthenia gravis depending on the muscles which are affected by the disease:
1. OCULAR MYASTHENIA GRAVIS: Ocular myasthenia is a form of myasthenia in which the extraocular muscles, the muscles that control the eyes and eyelids, are easily fatigued and weakened.
2. GENERALIZED MYASTHENIA GRAVIS: In Generalized Myasthenia Gravis weakness involves the ocular muscles and a variable combination of the muscles of the arm, and legs may affect all the muscles, including those necessary for respiration.
What are the possible symptoms of Myasthenia Gravis?
You may have the following symptoms in myasthenia gravis.
- Dropping eyelids
- Blurred vision
- Double vision (Diplopia)
- Difficulty chewing
- Arm or leg weakness (difficulty walking or lifting things)
- Hand or finger weakness (difficulty pressing down on things with fingers, or typing on a keyboard)
- Neck muscle weakness (difficulty holding up your head)
- Choking when trying to swallow
- Difficulty breathing/shortness of breath
- Rapid fatigue of muscles (example: walking up a single flight of stairs might make your legs feel like you went on a three-mile run)
How is Myasthenia Gravis diagnosed?
Edrophonium Test: Edrophoniumis sometimes used as a diagnostic test for myasthenia. A 2 mg dose is injected intravenously (IV) after baseline measurements of muscle strength.
Blood testing: These tests check for antibodies that are present in persons with myasthenia gravis.
Ice-pack Test: An ice-pack test can be used in place of an edrophonium test. For this test, an ice pack must be placed against the eye for 2-5 minutes.
What are possible treatments of Myasthenia Gravis?
There is no cure for myasthenia gravis disease it is treated with respect to symptoms only.
Acetylcholinesterase inhibitors increase the level of ACh at the neurons and muscle junction by preventing its enzymatic degradation. Edrophonium, Pyridostigmine bromide, neostigmine
Intravenous immunoglobulins (IVIG)
Surgical Treatment: The thymus can be surgically removed in a procedure known as a thymectomy. In most cases, it causes the symptoms of myasthenia gravis. [1]
How can we promote Myasthenia Gravis Awareness?
A teal ribbon is a famous symbol for myasthenia gravis awareness because of the color teal. Some people also like to use snowflakes to symbolize because each individual’s case in myasthenia gravis is different. Myasthenia Gravis is highlighted throughout the month of June as a way to raise awareness.
Many people with Myasthenia Gravis and their loved ones like to wear shirts to raise awareness. There are also great options for phone cases, tote bags, and throw pillows.[3]
What are similar diseases to Myasthenia Gravis?
Below are some diseases which are similar to Myasthenia Gravis that can lead to a misdiagnosis due to misinterpretation.
- Muscular Dystrophy
- Multiple Sclerosis
What are some organizations that provide support for those diagnosed with Myasthenia Gravis?
Myasthenia Gravis Foundation of America – The only national volunteer health agency in the United States dedicated solely to the fight against Myasthenia Gravis
Myaware – The only charity in the UK dedicated solely to the care and support of people affected by myasthenia
National Organization for Rare Diseases (NORD) – This is a link to the NORD Myasthenia Gravis page
International Consensus Guidance for Management of Myasthenia Gravis 2020 Update
STORIES FROM OUR READERS:
- Beating the doctors to a diagnosis: my journey with MG.
I had to research and take my health into my own hands.
References and citations:
1-https://www.ncbi.nlm.nih.gov/books/NBK559331/
3-https://www.aanem.org/News-Express/Education/June-is-Myasthenia-Gravis-Awareness-Month!