FOR years, 27 year-old Janelle Boisson suffered from bouts of total paralysis and questioned her sanity, only to be diagnosed four years ago with multiple sclerosis (MS). No one else in her family has the disease.
“When I found out I had MS I was relieved that I was not crazy,” she told Sunday Newsday. “I remembered one doctors asking my mother if I was an outpatient of St Ann’s because all my tests were showing that I was normal but I kept having the paralysis, and after short time in hospital I was back out.”
She used to be an outgoing, fun loving young woman, she said, pursuing her dreams to become a writer after switching degrees from biology to English. One day in 2011, she felt a tingling in her left arm and her legs went numb. This feeling went on for about a week and after a quick visit to the doctor she was given medication. All was well. At least, that's what she thought.
Boisson never took any serious note of the symptoms. Even with her limited exposure to MS through her studies in biology, the neurological disease was never something she thought about. After being “cured” of the tingling and numbness for over a year, Boisson fell ill again. This time her symptoms were more severe and she also experienced paralysis and trouble breathing. She felt like she was dying.
“My entire body was paralysed. I was in pain. My stomach was hurting. By the time I reached to the hospital I was normal and doctors couldn’t tell what was wrong with me. I was sent home and told to check the health centre in my area,” Boisson said. She would visit the hospital four times before she would eventually be diagnosed.
During a lecture on MS at the Hyatt Regency in Port of Spain last Thursday, neurologist Dr Arnoldo Soto said the disease has no known cause or cure. Diagnosis is only done through a process of elimination as there is no standard tests for the disease. Soto is the medical manager for neurosciences with pharmaceutical giant Roche.
Soto said that in his discussion with MS patients and their relatives, most of the symptoms are unpredictable. Fatigue, pain, mobility impairment, muscle weakness, memory loss, respiratory problems and seizures are just some of the many symptoms patients with MS experience. Treating MS is ultimately about managing the symptoms and, because no two patients are the same, it makes it even more difficult. While magnetic resonance imaging (MRIs) can show lesions in the brain, which is consistent with most MS patients, some scans do not show the lesions, leaving some patients undiagnosed.
Boisson, a clerk at the Ministry of Public Utilities, has to be hospitalised for at least two days every six months so she can be given Rituximab, a drug used to treat cancer patients, intravenously.
She has suffered from depression and received counselling for suicidal thoughts. At one time she was simultaneously on anti-seizure medication and sleeping medication. She laughed at the experiences of having to battle both fatigue and insomnia. Her writing dream was set aside because of the constant fatigue, lack of focus and her now terrible handwriting. Despite this she believes “this happened to me for a reason.”
Boisson said she is not afraid of sharing her experience, and one of the most common misconceptions she has had to deal with is explaining that MS is not scoliosis, a disease that affects the spine. Based on the extended disability status scale (EDSS) used to define the progression of disability, Boisson is at level three – moderate disability in one functional system, or mild disability in three or four functional systems, with no impairment to walking. She's been at this stage for over three years, but when she was diagnosed, she was at level 6.5, which meant she needed assistance to walk. She lives alone and although she has not driven in almost five years and has limited her outdoor activities, having a family of her own is not something she has given up on. Her bubbly personality is fuelled by her desire to maintain a positive attitude.
“I learnt is either you laugh or cry and I choose to laugh,” Boisson said.
World MS Day is celebrated on May 30. This is the first in a series of discussion on the disease leading up to that day. Next week's article will focus on care and treatment for MS.