Living with Myasthenia Gravis:  Shanina’s Story

What is Myasthenia Gravis?

Myasthenia Gravis is an autoimmune disorder in which the skeletal muscles that function under voluntary control become weak. Some of these muscles control the eyes, mouth, throat, limbs, and breathing. To that end, patients typically have weakness of the eye muscles, drooping eyelids, double or blurred vision, difficulty with facial expressions, swallowing, shortness of breath, impaired speech and weakness in the arms, hands, fingers, legs, and neck.

Who is more likely to get Myasthenia Gravis? What are the causes?

Myasthenia Gravis does not discriminate based on race or ethnic background. It affects both males and females. It commonly affects females under the age of 40 and males over 60. It is not hereditary nor contagious. It is not uncommon for it to occur in more than one member of the same family.

Antibodies attacking the normal muscle receptors at the junction where the muscle and nerve meet is usually the cause of Myasthenia Gravis. It blocks a chemical needed to stimulate muscle contraction.

How is Myasthenia Gravis diagnosed?

Myasthenia Gravis is typically diagnosed after several trips to your primary care physician. They make the diagnosis based on your symptoms and tests performed. They will also test your response to certain medications previously prescribed.  When given anticholinesterase medicine muscle weakness improves dramatically. If this occurs, it confirms Myasthenia Gravis. There are a host of other tests that may be done to help with diagnosis such as: blood test: to determine if antibodies are present; Genetic test: to determine if it runs in the family; Nerve conduction studies: to test repetitive nerve stimulation; and Electromyogram (EMG): to measure the electrical activity of a muscle.

How is Myasthenia Gravis treated?

The treatment for Myasthenia Gravis is determined by your healthcare provider. There are several factors that aid in the plan such as: age, overall health, degree of illness, response to various medications and therapies, time frame of the condition and lastly your preference.

Unfortunately, there is no cure for Myasthenia gravis, however the symptoms can be controlled. Early detection is important. The goal is to increase the functionality of the muscles to prevent swallowing and breathing problems.

Everyone’s journey with Myasthenia is different. Please read Shanina’s Story below.

My Myasthenia Gravis journey started in December of 2005. It was a Sunday, and we were on our way to church. I remember it plain as day. I was standing on the steps holding Asia,

one of my twin daughters. As I turned around to walk back up the steps into the house, I dropped Asia and fell down the steps. The more I walked, talked, chewed, swallowed or anything that involved using my skeletal muscles, my involuntary muscles became super weak and painful. I remember trying to step over a small toy on the floor and falling on my back. It took the doctor a month to finally realize that I didn’t have postpartum depression. I was in the office one day when I fell on the bed, bounced off and landed on my doctor. They performed a test called electromyogram (EMG), which involves placing a very tiny electrode needle into the muscles, and the muscle will then be examined. This is done both with the patient relaxing the muscle and with the patient activating the muscle.

My life has changed drastically, I can’t do the things that I used to do because I always must be aware of my muscle strength. Most people don’t know or understand my disease and they would refer to me as a drunk or just lazy, because of the weakness of my eyes and slurred speech.

There are a few things I wish people would understand. For starters everyone’s disease presents a little differently – that’s why myasthenia is known as a “snowflake disease. It can be difficult to diagnose, and some people go years without a correct diagnosis. Although it improves with rest, symptoms tend to fluctuate throughout the day, week by week or month by month. And lastly, MG warriors are stronger than their weakest moments.

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