On road to recovery from chronic pain and 10 years of misdiagnosis

For Benedettah Mwangi, 45, walking is an arduous task. The mother of one experiences severe headaches whenever it is cold. So bad is the condition that sometimes she is unable to write. The primary school teacher says she has been sick all her life.

"I have been to hospitals since I was a child. As a teenager, I always had blisters, septic wounds and tonsils that no one seemed to understand. Sometimes it got too bad I had to be sent home from school.’’

Her bouts of pain and complications, however, never stopped her from leading a normal life, including falling in love, and dreaming. ‘‘As a young girl, I wanted to become a journalist,’’ she tells Healthy Nation.

When she got married and became pregnant, her pregnancy came with mobility challenges. “I couldn’t walk. I would drag my feet around. Doctors, however, assured me that the problem would go away  after delivery of my baby.”

Then 29, she delivered after 43 weeks through Cesarean-Section. She recalls: “It was interesting because even after being fully anaesthetised, I was up in less than an hour. The baby had been safely delivered.’’ The doctors cautioned her against getting pregnant anytime soon, advice that she would later learn was erroneous. Four years later, she developed a severe back problem that threatened her ability to engage in physical activities, she recounts.

In an attempt to address the situation that was already deteriorating, doctors advised her to undergo an X-ray. The results showed that her back had an abnormality. She was then put on medication and physiotherapy. In 2011, she consulted a neurologist who, suspecting multiple sclerosis (a chronic disease affecting the central nervous system, including the brain and spinal cord), ran a series of tests on her. Nothing was found.

Multiple sclerosis (MS) occurs when the immune system attacks nerve fibres and myelin sheathing (a fatty substance that surrounds/insulates healthy nerve fibres) in the brain and spinal cord).

Benedettah was put on steroids, a move that would turn out to be a masterstroke.  ‘‘I was rehabilitated effectively,” she says.

But just when she thought her agony was nearing its end, her doctor moved to a different hospital. They lost contact. “I was forced to see another doctor. This one did not stick to the treatment regime I was getting from the neurologist.’’

Disappointed, she dropped the new doctor but continued with her physiotherapy for some months. Her condition started to deteriorate again and the pain became unbearable. It was so bad that touch alone was painful.

It is then that one doctor advised her to do a thyroid CT scan as her condition presented multiple thyroid problems. The CT results showed she had some developing thyroids (Colloid nodules). These were removed.

While the surgery marked the end of severe pain, it occasioned the beginning of severe muscle complications that it became difficult to support her neck.  She recounts: “I had to use the thoracic collar for a long time against the advice from my doctor. I used it anyway because I did not want to consult a neurologist.’’

But her hesitancy to see one would dissolve after her pain persisted. She resolved to see a neurologist. This one would treat her for Myasthenia Gravis.

Myasthenia Gravis (MG) is a chronic autoimmune disorder in which antibodies destroy the communication between nerves and muscle. This results in the weakness of the skeletal muscles. MG affects the body’s voluntary muscles, especially those that control the eyes, mouth, throat and limbs. 

Benedettah would be on treatment for MG for two years.

During that period, she started losing her mobility progressively, contracted diabetes and nearly lost her left thumb through amputation. Meanwhile, she developed a breathing problem that progressed quickly. “I could barely support myself. One morning I woke up and my right leg was almost stuck with my left. I could not move them,’’ she tells Healthy Nation.

Ten years later in 2021, experts would discover that she had been battling Transverse Myelitis (TM), a rare neurological syndrome and disorder that inflames the spinal cord. TM is one of the most expensive conditions to treat.

According to John Hopkins Medicine, there are four classic symptoms of the condition, including weakness in the arms/legs, sensory symptoms such as numbness or tingling, pain and discomfort, bladder dysfunction and/or bowel motility problems.

The distribution of these symptoms may be symmetric or asymmetric, affecting either legs, arms or both. Experts further explain that the word transverse indicates dysfunction at a particular level across the spinal cord.

“The cause of 60 per cent of TM cases may remain unknown despite the presence of inflammatory mechanisms. However, the remaining 40 per cent is associated with autoimmune disorders such as multiple sclerosis, neuromyelitis optica, systemic lupus erythematosus, Sjogren’s syndrome and sarcoidosis among others,’’ John Hopkins Medicine says.

The term idiopathic — meaning the cause is unknown or could not be determined –has also been used in the past. The lack of demonstration of a causative disorder mechanism or agent, however, may be the result of failure of an early diagnosis. It could also be the result of causative factors that disappear quickly. Such is the case in viral infections or post-infectious disorders, John Hopkins explains.

“I went back to intensive rehabilitation therapy and medication. I am now regaining my mobility. My right leg is still very weak. But I can rate my recovery at 60 per cent,” says Benedettah.

As she narrates her agony, her disappointment is evident. It annoys her that she had to go through 10 years of trial-and-error and misdiagnosis just to find out what was ailing her. She says this experience made her realise the existing gap management of neurological conditions in the country.

“The government should develop a diagnosis protocol to facilitate treatment. I strongly think neurologists should strictly be prohibited from managing or prescribing psychiatric medication,’’ she says, noting that the opinion of several specialists should be considered before putting down a case as psychiatric.

Dr Juzar Hooker, a consulting neurologist in Nairobi,  says:  “The initial symptoms are weakness of the limbs with associated loss of or impaired sensation and dysfunction of the bladder and bowels.”

Patients with immune attacks after infection and autoimmune neurological conditions such as neuromyelitis optica and multiple sclerosis should be on the lookout as these are potential causes of TM, according to Dr Hooker.

In Kenya, the illness is managed with corticosteroids, plasma exchange and immunomodulatory therapies.

Dr Hooker notes that the cost of treating TM depends on its severity and its causes. “It is a relatively expensive course of treatment, sometimes long term,” he adds.

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