MS patient finds success with drug treatment
Injections, chemo keep woman, 39, mostly symptom-free
By CLARE MELLOR Staff Reporter
Mon, Sep 27 - 4:53 AM
Julia Stewart smiles while showing the lack of tremors in her hands during an interview in Bedford on Sept 21. Stewart was diagnosed with multiple sclerosis in 2004 and says that aggressive drug therapy has improved her quality of life.
Julia Stewart had never been nervous in front of a crowd and was bewildered one day when her right hand started to shake uncontrollably as she was giving a presentation.
She was even more taken aback when the shaking didn’t stop.
"I was like, ‘I’m not nervous. I’m not nervous.’ " What is going on?" said the 39-year-old.
"It just progressively kept getting worse. I couldn’t hold anything. I couldn’t write."
Finally, in February 2004, after eight months of frustrating doctor’s visits, an MRI revealed eight or nine lesions on her brain leading to a diagnosis of multiple sclerosis.
The news was a shock to Stewart, who had been healthy all her life and had no family history of the disease.
By that time, Stewart’s symptoms were so severe that she was forced to take a leave from her postgraduate studies and her job at the time as a tour guide.
"(The tremor) moved right into my body, my legs. I couldn’t pull up my pants. I couldn’t really walk that well, "
In multiple sclerosis, the layer of myelin, or white matter, that surrounds and protects the nerves in the brain and spinal cord is damaged over time, leading to neurological problems. The disease can progress slowly or rapidly and with or without long periods of remission.
"It was pretty quick. I was getting to the point that I couldn’t look after myself," recalled Stewart, who lives in Wolfville with Tony, her partner of 12 years.
Following the diagnosis, Stewart went to Dalhousie Multiple Sclerosis Research Unit at the Halifax university, where she enrolled in a clinical drug trial and has received support and treatment.
Stewart has a "relapsing-remitting" form of the disease, where she suffers episodes and then bounces back.
"Sometimes, you don’t bounce back all the way," said Stewart, who looks vibrant and healthy. "I haven’t had that misfortune yet. Every time I’ve had one, I’ve come back."
After the clinical trial, she was placed on an approved injectable drug and was mostly symptom free for a couple of years.
She was able to finish her master’s degree in library and information studies at Dalhousie University.
However, an MRI research study that she participated in at the clinic revealed 11 new lesions on her brain, which spurred doctors to treat the disease aggressively with chemotherapy.
She received a low dose of the chemotherapy drug Mitoxantrone for 2½ years.
"I felt fantastic. I was able to run again. I was able to bike. I was able to snowshoe, do whatever I wanted to do. This was the way I was used to living."
Stewart, a youth services librarian at Halifax Public Libraries, now takes another injectable drug once a day, which she hopes will keep her condition stable. She has been relapse free since October 2008 and is happy to be well.
She said the insight she has gained in dealing with multiple sclerosis is helpful in supporting Tony, who is battling cancer.
"MS has really helped me understand what he is going through. It makes me less judgmental."
Stewart had an MRI three or fourth months ago and the report "was perfect," she said.
"I don’t have any new lesions."
But Stewart said she believes neuroscience research is the only way to find more effective treatments and an eventual cure for the disease.
"The problem with MS is it is such an unpredictable disease. The way that MS affects the brain is so different for everyone. I don’t think they can tell me anything. I don’t think they can tell me how long I’ll be relapse free."
"Every day that I can feel my feet, and wiggle my toes, and go to work and ride my bike or walk my dog is all good."
The funds raised through the Molly Appeal are essential to research diseases such as MS, Dr. Alan Fine, director of the Neuroscience Institute at Dalhousie University, said in a recent interview.
The money raised this year will go toward paying the stipends of people training in brain research.
It will allow Dalhousie to compete with other institutions across the country and internationally to attract the best people in the field.
"It’s a tough market in the sense that there are not so many young people as needed going into research science right now," he said.
"In some measure, that’s because of financial considerations. These people come out of undergraduate studies with heavy student debts and the last thing they want to do is go deeper in debt. So having some sort of stipend is very important."
Dalhousie has embarked on a number of innovative research projects in neurosciences, Fine said.
For example, researchers use one of the most advanced brain-imaging systems in the world, called magnetoencephalography, or MEG, which allows them to observe electrical activity in the brain as it occurs.
In another project, stem cells from the patient’s own body are used to replace damaged parts of the nervous system.
Unlike procedures that use stem cells from fetal tissue, the stems cells are developed using the patient’s skin cells.
The early use of Mitoxantrone was because her disease was so aggressive. The drug can be very useful, but at a price. With each dose it damages the heart a little bit, so that the length of time it can be used is determined by total dosage (usually 2 to 3 years) or by seeing that heart function is approaching unacceptably low function.
Tremor, especially the violent and total body type are extremely hard to control or treat.
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