Myasthenia gravis: Eternal pain without a cure?

After years of pain and searching for a treatment that started during her teenage years, Beneddettah Wangui was diagnosed with fibromyalgia in July 2012 at the Aga Khan University Hospital. She was 35. For years, Wangui’s life was characterised by widespread musculoskeletal pain, fatigue, memory, and sleep challenges. By the time she got a diagnosis at 35, Wangui had consumed over Sh. 1 million in treatment and examinations. Despite her diagnosis, her struggles with the condition did not end. Seven years later, in 2019, Wangui received a second diagnosis. “I was diagnosed with myasthenia gravis, a condition that causes weakness in the skeletal muscles responsible for breathing and moving body parts such as legs and arms,” she says.

According to Johns Hopkins Medicine, myasthenia gravis is a chronic autoimmune disorder in which antibodies destroy the communication between nerves and muscle, resulting in weakness of the skeletal muscles. Myasthenia gravis is also known to cause drooping eyelids, difficulty in walking, chewing, swallowing, and double vision. Myasthenia gravis is rare and difficult to diagnose.

According to a medical report on the disease by the Institute of Neurological Disorders and Stroke based in the United Kingdom, myasthenia gravis is rare and is estimated to affect more women than men. “It affects both men and women and occurs across all racial and ethnic groups. The most affected, though, are women aged 40 and below and older men aged 60 and above,” says the medical report. Johns Hopkins Medicine echoes this. “The disease can strike anyone at any age, but is more frequently seen in young women (age 20 and 30) and men aged 50 and older,” says Johns Hopkins Medicine.

Causes

Johns Hopkins Medicine states that myasthenia gravis is neither inherited nor contagious. “This condition usually develops later in life when antibodies in the body attack normal receptors on muscle. This attack blocks the chemical needed to stimulate muscle contraction,” says Johns Hopkins. “However, there is a temporary form of myasthenia gravis which may develop in the fetus. This usually happens when a woman with the condition passes the antibodies to the fetus. However, this form resolves itself within 2 to 3 months.”

Symptoms

Symptoms of myasthenia gravis will vary from one patient to the other. In some patients, the disease may bring about hypothyroidism – a condition in which the thyroid gland fails to produce enough thyroid hormone which affects nearly every part of the body including the heart, muscle, brain, and skin.

General symptoms of this condition include visual problems. This may include drooping eyelids known as ptosis and double vision which is known as diplopia. Other symptoms include muscle weakness and fatigue. This may vary rapidly in intensity over days or even hours and worsen as the patient gets fatigued. “Facial muscle involvement will cause a mask-like appearance or a smile that looks more like a snarl, difficulties in swallowing, or inability to pronounce words correctly. A weak neck or limbs are also general prevalent symptoms,” says Johns Hopkins Medicine.

Managing the disease

This condition doesn’t have a cure. However, it can be managed and controlled through medications such as Mestinon, Azoran, Prednisone, and calcium supplements. The cost of one tablet of Mestinon is between Sh. 45 and Sh. 90. Some patients will take up to 12 pills per day. There are also varieties of pills that go for as much as Sh. 9,000 for a pack of 12 tablets. Apart from the cost of pills, the consultation fee for seeing a specialist will range between Sh. 4,500 and Sh. 15,000 per session. There are patients who may opt to undergo a surgery called thymectomy which involves the removal of the thymus gland. This surgery is aimed at preventing the gland from turning cancerous and stopping the production of the antibodies that accelerate the weakening of muscles. It costs as high as Sh. 600,000 depending on the hospital where it is performed. Johns Hopkins Medicine says that this surgery reduces symptoms in more than 70 percent of people who do not have cancer of the thymus, possibly by altering the immune system response.

Plasmapheresis and immunoglobulin are two other control measures that may be undertaken against this condition. “Plasmapheresis is a procedure that removes abnormal antibodies from the blood and replaces the blood with normal antibodies from donated blood. Immunoglobulin is a blood product that helps decrease the immune system’s attack on the nervous system. It is given intravenously (IV),” states Johns Hopkins Medicine.

When to call on your doctor

If you have this condition, Johns Hopkins Medicine recommends that you must see your doctor as a matter of emergency if you have:

• Blurred or double vision
• Slurred speech
• Difficulties chewing or swallowing
• Drooping eyelid
• Difficulties in breathing
• Weakness in your arms and legs
• Chronic fatigue