> http://www.canada.com/health/CAUSE+CURE/2397343/story.html
A very nicely written article, the kind you can show to people who
have never heard of MS. I like the descriptions of the symptomolgy.
"The one thing all MS cases have in common is that they are all
different." (paraphrased) New patients, their friends and families, and
the public, all need to have that explained to them.
It's also nice to hear that someone far from Italy has undertaken to
cross-check the studies of CCSVI.
Thanks for posting this link, Peter.
Bill
__o | Profanity and obscenity entitle people who don't
_`\(,_ | want unpleasant information to close their ears
(_)/ (_) | and eyes to you. - Kurt Vonnegut
Could you please post this entire article? I tried to get it from the
website, but all I get is a blank, white screen.
Susan E.
http://www.canada.com/health/CAUSE+CURE/2397343/story.html
VANCOUVER -- Multiple sclerosis is a frustrating black box. Something is
going on in that box that leads to lesions in the brain and damage to
the myelin insulating layer on nerve cells. What that means to patients
such as Gabrielle Veto is muscle pain, loss of strength, constant
fatigue, occasional paralysis and the spectre of life in a wheelchair
always lurking beyond the next attack.
"One of the biggest frustrations with MS is that so much is unknown,"
said Veto, who was diagnosed at the age of 27 when she started to
experience abdominal pain in 1996. She had been married to husband Alan
Pearce for one year.
Veto's case is like all cases of MS: it is completely unique and
unpredictable.
"I ended up in Vancouver General Hospital emergency five times in one
week," Veto recalled of her first attack.
At first no one knew what was wrong. Doctors kept looking around the
abdomen until her symptoms took a bizarre twist.
"I was in the shower and I couldn't tell the temperature of the water on
one half of the trunk of my body," she recalled. "I could feel it
hitting me but I couldn't tell if it was hot or cold.
"I thought to myself, 'This is weird,'" she said.
But it was a clue that doctors were looking in the wrong place. By the
time she got in to see a neurologist three weeks later, she was dragging
a near-useless right leg. "It wasn't hurting any more, it just wouldn't
work."
Veto's episodes continued to come every few months, each bringing a
completely new symptom set.
Like most newly diagnosed MS patients, Veto began to consume everything
she could find on the disease from the Internet and the MS Society.
What she found was literature describing a huge variety of symptoms and
no real consensus about its cause. More chilling is the total absence of
a cure for a disease that tends to rob people of their strength,
mobility and senses in a series of attacks that severely debilitate and
then relent. With each episode the body is robbed of ability.
"It was completely devastating emotionally," said Veto. "You know that
there is no known cause and you know that there is no cure and you know
that you could be in a wheelchair in six months."
Veto lost the use of her left arm and leg in her second attack a few
months after the first.
"That was even worse than the initial diagnosis," she said. "Once you
wrap your head around having the disease you start to think, 'Well,
maybe I won't have another attack for 20 years and I'll be fine.' But I
wasn't."
She has since recovered most of the use of those limbs, but the bout of
paralysis brought home the enormity of her situation. Veto had frequent
relapses for four years when she began a drug therapy that has reduced
the frequency and severity of her attacks.
Veto was forced to give up her job as a TV reporter and take a job as a
producer, which kept her in the office. Chronic fatigue has kept her
from working since 2002.
Veto has volunteered to participate in a study to be led by scientists
at the Brain Research Centre, a collaboration between UBC and Vancouver
Coastal Health, and world leader in the race to unlock the secrets of
MS. Patients like Veto, the doctors who treat MS patients at UBC
Hospital's MS clinic and the scientists trying find its cause and cure
are in a sense all working together.
"I think research is the key to ending MS," said Veto. "I've worked
really hard to come to terms with living with the disease, but I know
that learning to live with a chronic condition is not the final answer."
Through the centre, scientists have unprecedented access to patient data
and sometimes tantalizing observations about patients from the doctors
who work with them, observations that help to steer research in
unexpected directions.
Researchers are able to respond to new information with unprecedented
speed, according to Tony Traboulsee, director of the MS Clinic at UBC
Hospital.
UBC is embarking on a study that will examine the association between MS
and vascular anomalies that interfere with the brain's blood supply. An
Italian researcher published his findings on the link late in November.
Traboulsee got the news within hours by e-mail in Hong Kong and flew
back to Vancouver the next day for a meeting between the MS researchers,
radiologists, MRI researchers and clinicians.
"When news of a potential breakthrough happens we have all the
infrastructure we need to assess it and act on it," he said.
"We asked ourselves whether there was any substance to it and how we
should act on it," he recalled. "That all happened within 48 hours."
Even the anecdotal observations of doctors can help researchers decide
which direction to shine their light. "It's a bedside to bench and back
to bedside approach," he said.
When Traboulsee saw a three-year-old apparently presenting with MS, the
brain trust met to ask questions. Can a three-year-old have MS? If so is
it different from adult MS?
Weeks later a Canada-wide study was underway.
"What triggers the disease is unknown and that makes it very tricky,"
said Brain Research Centre researcher Helen Tremlett. "Even when people
develop symptoms there is quite a good possibility that they have
already had the disease for a number of years."
Onset of adult MS could occur in childhood or even in the womb.
The study of pediatric MS patients holds hope that the trigger or even
the means of attack will be more evident.
But even the most promising research into multiple sclerosis remains
frustratingly distant from revealing its cause and the potential for a cure.
Trying to find the trigger for the disease years after the fact is like
"looking for a needle in a haystack," Tremlett said.
But it's much harder than that. It's as though the haystack is encased
in lead.
The damage evident in the brains of MS patients, lesions, nerve damage
and demyelinization, may be the result of the attack of the disease or a
response to the damage of the attack.
"It's a chicken and egg thing," she said. "We don't know what the secret
event is that triggers the disease."
If the loss of myelin insulation on the axons that connect brain cells
damages the axons, then the best treatment would halt demyelinization.
But damage to axons might precede damage to the myelin and that would
call for a whole different kind of treatment.
Myelin damage is closely associated with relapses, while axonal damage
is closely related to long-term disability.
In the meantime, doctors cannot cure their MS patients. They settle for
treating symptoms and trying to change the course of the disease, trying
to reduce the number and severity of relapses and delay its degenerative
effects.
Promising Beta Interferon drugs slow the rate of relapses, reduce
inflammation in the brain and strengthen the blood brain barrier.
"We can reduce the number of relapses which is great for the patient,
because relapses are unpleasant and can knock you out for months, but
ultimately we may not be treating the disease," said Tremlett.
� Copyright (c) Canwest News Service
On Mon, 11 Jan 2010 16:16:56 -0800, SEst...@webtv.net (Susan Esterby)
wrote: