Karen Jacoby says she is “elated” by new research that deepens scientists’ understanding of multiple sclerosis.
Jacoby, 39, was diagnosed with multiple sclerosis in 2020, when she was just 33.
She believes she had the disease long before she first experienced severe symptoms in 2018. But she spent many years “reasoning away” what she now knows were flare-ups of MS symptoms.
She visited doctors numerous times before her diagnosis, looking for explanations for numbness in her feet and fatigue. In 2018, she had an MRI of her spine after the right side of her body was temporarily paralyzed — but was told by a doctor she did not have MS, though she had raised it as a possibility.
Jacoby’s experience aligns with the findings of a new study from the University of British Columbia, which says people may begin developing multiple sclerosis up to 15 years before the disease’s symptoms appear.
“MS may start earlier than we previously thought,” said Helen Tremlett, lead author of the study, which was published Aug. 1 in JAMA.
Researchers analyzed 25 years of health records for more than 12,000 B.C. residents, some of whom were diagnosed with MS, some of whom were not.
They found that people who were eventually diagnosed with multiple sclerosis visited doctors more often in the 15 years before MS symptoms appeared compared to those without the disease.
Tremlett’s previous research had indicated that MS symptoms may begin up to 10 years before they become obvious.
“I hope [the new research] makes people think [that] if we want to know what causes MS, we need to look back further in time,” said Tremlett, a neurology professor at the University of British Columbia’s Faculty of Medicine.
“What happened to people in the year before — or two years before — their MS symptom onset probably did not cause MS.”
‘A moment lost’
Multiple sclerosis is a neurological condition where the immune system attacks the protective covering of nerves. There is currently no cure for the disease, although symptoms can be managed.
Symptoms vary, but often include fatigue, difficulty walking, vision problems, numbness and weakness. For some people, symptoms are chronic; for others, they come and go.
Canada has one of the highest rates of MS in the world, with about 90,000 Canadians living with the disease. Canadians account for about three per cent of MS cases worldwide, while representing 0.5 per cent of the global population.
Some neurological diseases, such as Parkinson’s, have what is called a prodromal phase, during which a person experiences non-specific disease symptoms.
Medical experts had long assumed patients with MS did not experience this phase, says Tremlett.
Her new study suggests otherwise.
In the study, people who were eventually diagnosed with MS visited the doctor for general symptoms such as fatigue, dizziness, pain, anxiety and depression 14 to 15 years before their diagnosis.
Visits to psychiatrists increased 12 years before diagnosis, with blurry vision and eye pain increasing eight to nine years before the diagnosis. Visits to emergency departments became more common in the five years prior to a diagnosis.
Jacoby, who is today a volunteer ambassador for MS Canada, says knowledge like this could have led to an earlier diagnosis.
After she was told in 2018 that she did not have MS, her symptoms continued. Near the end of 2019, she was experiencing incontinence, optic nerve damage and cognitive difficulties that made her unable to communicate. A brain MRI finally confirmed she had the disease.
Jacoby’s MS has not progressed since her diagnosis, in large part because of her treatments. But she struggles to walk, lives with fatigue and can no longer work or run the way she once did.
“A moment lost in advocacy could mean a lifetime lost in function,” she said.
“This research really does confirm what many of us living with MS have felt — which is that the disease can start impacting our health years before the first obvious symptoms.”
‘Maximize outcomes’
Tremlett says that while the research is helpful for understanding MS, it should not cause people to think they have the disease if they are experiencing some common MS symptoms.
“The vast majority of people who visit a doctor for the [reasons people eventually diagnosed with MS did] do not, and will not, develop MS,” she said.
Similarly, doctors should not automatically assume that if someone is coming to them with fatigue or dizziness or vision problems, for example, that they are developing MS.
The research also does not say what causes multiple sclerosis, she says.
But it should give hope about the future of research into preventing the disease.
“We’re not there yet, but [the research] may help us to really get in there and prevent long-term disability and maximize outcomes for people with MS in the future.”
In Toronto, Jacoby shares that hope.
“I’m addicted to hope because I believe, with this continuing research, that a cure very well could be found or will be found.”
I’m very glad to hear this. My husband was not one to run to the doctor, but had back problems, a weakness in one leg, a problem that was diagnosed as being caused by sitting on a drafting stool, a leather and steel back brace for four months, ‘electric shock’ feelings in his neck and arms, surprising emotional occurences, occasional spasms, and other things which either went away before getting to the doctor, or he was told to come back if the symptom didn’t go away or returned, and finally a loss of vision in one eye before getting a diagnosis as a possible/probable case of MS in 1990 at the age of 46 after a CT scan. Until the introduction of MRIs, there was only a spinal tap available for confirmation. There was precious little available to alleviate symptoms with the exception of massive doses of steroids which worked. He then progressed to the definition of relapsing/remitting MS. When something became available it was not covered by Healthcare and was expensive way beyond our means. When it was finally covered, it was determined that his condition had progressed to where what was available to him was not probably useful as it was designed to assist in early stages. A number of years later, daily injections were prescribed for him. After two years, the doctor was unsure whether it was still useful to slow the progression. He “had” MS for 30 years before he died, but had improperly diagnosed or undiagnosed problems for at least 10 years if not longer before that. He was not one to complain, requiring vigilance on my part. He had an occurence of a likely stroke for which there was no treatment given, resulting in loss of walking and balance, a wheelchair in a long term care residence where there was little understanding of MS by the caregivers. He had most of his teeth removed due to the previous frequent doses of prednisone. Ultimately he received no prednisone and no Vitamin D supplements. He developed moderate dementia and increased muscle cramps and died in multiple spasms for 2 days at the age of 77 in 2021.
I was diagnosed of Multiple Sclerosis , my symptoms started out with severe fatigue, poor balance, numbness, double vision, heat intolerance and anxiety. I was unable to go back to work, I tried Betaseron for about 6 years. Tried every shot available, all made me sick. In May this year, I started on Multiple Sclerosis (MS) Herbal formula from www. madibaherbalcenter. com , the treatment worked incredibly for my MS condition. I used the Natural MS Herbal formula for a total time period of 3 months, it totally reversed my Multiple Sclerosis. I had a total decline of all symptoms including vision problems, numbness and others. Sometimes, i totally forget i ever had MS.