caution larry

Hi, I’m Kim! This site provides a little insight to my journey of being diagnosised with Remitting Relapsing Multiple Sclerosis on October 26th 2004. I review books and documentaries, post MS-related news, and share my photos.

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Wednesday, September 24, 2008
The impact of stressful life events on risk of relapse in women with MS: A prospective study
A topic that for myself, I'm particularily scared of. My personal life in the past several years has been the highest level of stress I've ever experienced and I often wonder what impact its all had on me. I have just finished moving and now I can finally peacefully rest. But will I be hit with an attack? What will it be? This report below certainly shows that stress plays a greater role in relapse. Will my friendly Fingolimod trial drug in my body help me out here? I've been relapse free now for 13 months. My average attack rate over the last 4 years has been one a year. Here's hoping for many more months without a relapse!

"PURPOSE: The aims of this study were first, to examine the general relation between stressful life events (SLEs) and clinical relapses in women with multiple sclerosis (MS) and second, to investigate the relations of the specific stressor attributes of duration, type, and severity on MS exacerbations.

METHODS: Twenty six ambulating women with relapsing-remitting MS were followed-up for a mean of 56.3weeks. Patients documented SLEs weekly in self report diaries which were then collected at regular pre-scheduled clinic visits every 4weeks. SLEs were classified as short-term if they had subjectively no lasting effect and long-term if they had a subjectively felt psychological impact that lasted at least 10-14days after the event. The severity of SLEs was determined using the Recent Life Change Questionnaire.

RESULTS: Experiencing three or more SLEs, during a 4-week period, was associated with a 5-fold increase of MS relapse rate (95% CI 1.7-16.4, p=0.003). The presence of at least one long-term SLE was associated with three times (95% CI 1.01-9.13, p<0.05) the rate of MS exacerbation during the following 4weeks. There was no significant association between the severity (95% CI 0.99-1.01, p>0.05) or the type (chi(2)=7.29, df=5, p>0.05) of stressor and the risk for relapse.

CONCLUSION: Ambulatory women with relapsing-remitting MS who experience cumulative SLEs may be at a greater risk for relapse. Duration is the only stress attribute that seems to increase the risk for relapsing in contrast to stress type and stress severity that were not found to interact with MS exacerbation

Lack of vitamin D linked to multiple sclerosis

Always nice to see the vitamin studies continue:

Children later diagnosed with multiple sclerosis had far lower levels of vitamin D than other youngsters, Canadian researchers reported yesterday in studies showing more links between the "sunshine" vitamin and disease.

These were the first studies to show the effects in children, although others have shown that adults who live in northern latitudes, who get less sun exposure, may have a higher risk of MS.

They also support a growing body of studies linking low vitamin D levels with disease, including cancer, heart disease, diabetes and tuberculosis.

Font:****Vitamin D, produced by the body when skin is exposed to sunlight, and also found in fatty fish, is added to other foods in many countries. Evidence suggests it helps lower blood pressure and boost the immune system.

Several studies presented at a meeting on MS in Montreal showed that children had low levels of vitamin D when they began to show evidence of the disease.

"Three-quarters of our subjects were below optimal levels for vitamin D," said Heather Hanwell, a graduate student in nutritional sciences at the University of Toronto, who led one study.

Hanwell's team studied 125 kids who had evidence of MS symptoms such as numbness. Twenty of the children were diagnosed with MS within the next year, Hanwell said. Blood tests showed 68 per cent of those children had vitamin D insufficiency.

On average, the children with MS had much lower levels of the vitamin than children who did not experience any other MS-like symptoms.

A study led by Brenda Banwell of Toronto's Hospital for Sick Children showed similar results.

"Seventeen of 19 children who had been diagnosed with MS had vitamin D levels below the target level," Banwell said.

The next step is to see if giving vitamin D supplements prevents MS or helps relieve symptoms, Banwell said. She said it was not clear how lacking vitamin D might be linked with MS.

Tuesday, September 23, 2008
The mystery of MS and its prevalence in Canada
Canada has one of the highest rates of multiple sclerosis in the world, according to an international survey.

The 2008 Atlas of Multiple Sclerosis showed MS strikes 133 people out of every 100,000 in Canada, the fifth highest rate among countries surveyed between 2004 and 2005.

Prevalence was higher in the United States, Germany, Norway and Hungary, according to the World Health Organization and the Multiple Sclerosis International Foundation, which published the report.

Some people with MS experience little disability during their lifetime. But up to 60 per cent are no longer fully able to walk 20 years after onset, which has major implications for their quality of life and costs to society, the report said. Symptoms appear around 30 years of age on average.

"The Atlas of MS reveals how these implications impact women more than men, by at least two to one, at an age when they are starting a family and developing a career," said Dr. Benedetto Saraceno, director of the WHO's department of mental health and substance dependence.

Canada has been a leader in terms of diagnosing, treating and working to improve the quality of life of people with MS. But keeping people with MS employed remains a challenge, the Multiple Sclerosis Society of Canada said.

Canadian women are more than three times more likely to get multiple sclerosis than men, according to a major study published in November 2006. Among those born in the 1930s, about two women contracted MS for every one man, at a ratio of 1.9 to 1. For those born in the 1980s, the incidence has grown to exceed 3.2 cases for every one case among men.

Why the sudden increase in the neurodegenerative disease, which attacks the brain and spinal cord, causing inflammation and damage that can lead to paralysis and sometimes blindness?

We don't know. We don't know what causes MS. We don't know what cures MS. The whys and wherefores of this mysterious disease have bedevilled scientists, health-care workers and victims for nearly 200 years.

Recent speculation about the cause has ranged from genetics to environment to vitamin deficiencies to even the birth control pill.

Health officials consider a country to have a "high" rate if they have more than 30 cases per 100,000.

The incidence among the provinces varies, from a high of 340 cases for every 100,000 people in the Prairies to a low of 180 cases per 100,000 in Quebec, according to a 2005 study by researchers at the University of Calgary.

Those aged 15 to 40 are most at risk. One out of every two Canadians know someone with MS.

People who live closest to the equator have the lowest incidence of MS.

However, that doesn't explain why the disease is nearly absent among Canada's Inuit in the High Arctic and among indigenous people in North America and Australia, or why it is rarely found in Japan.

Study suggests MS is environment-based, preventable
The study on the rising incidence of women with MS was done by a team of researchers led by George Ebers, a professor of neurology at the University of Oxford. It appears in the November 2006 issue of the journal Lancet Neurology.

The higher incidence of MS among women may not be bad news, according to the researchers — because it may help to shed light on what causes the disease.

"What is going on here is something presumably that is preventable," said Ebers, who was the lead author of the study.

"We just need to find out what it is in the environment. Because it has to be in the environment: your genes don't change over two generations, three generations."

Higher estrogen levels, less sunlight blamed
There has also been speculation that because MS is generally more prevalent in colder climates far north of the equator and far south of the equator, it may be due to vitamin D deficiencies.

The body produces the vitamin in response to sunlight and so vitamin D levels fall off in colder countries and in winter because the sun's rays aren't intense enough.

Because of the rising incidence of MS among women and because it seems to have started in the 1960s, many others have speculated that the cause may be connected to higher levels of the hormone estrogen due to the introduction of the birth control pill.

But Ebers, who spent 22 years at the University of Western Ontario in London, Ont., before going to Oxford, rejects these factors as likely explanations.

"I think one of the things one thinks of here is either that it's going to be something in the environment or it is going to be an environmental interaction with genes."

Wednesday, September 17, 2008
I need your help!
Hi everyone! Wow, I'm soooo behind on posting here, but I move in 2 days and life is crazy at the moment! And strangely enough, my MS hasen't reared its head during this process and I'm grateful for that. We'll see what happens when I get to stop and rest at the end of it all! Ha!

So, I have a big favour from all of you and I'd like to tap into your compassion and experience and expertise. I have a good friend who has a sister with PPMS. I don't know a lot about this "version" of this disease other than the progressive nature can be very severe. My friend lives a province away from her sister and can only send things to her. She wants to continue to stay in contact but cannot have phone conversations with her as this is too difficult a task for her sister to handle. So here is the question I've been asked. What can she send to her that would be appropriate, helpful, and most importantly respectful towards where she is at in her disease?

Here is her sisters condition as I have learned:
- She was given perhaps 5 years to live on getting diagnosed in her early 30's. She is now 41 and is quite far progressed with her MS
- Can not walk, is assisted in/out of bed, has spasms in extremities
- Can not communicate well, does not have strong cognitive function but does remember family members, just not time frames, sometimes confuses yes or no answers about where she has spent her time in a day
- bladder, fistula problems and colestomy bag complications are routine
- seems to enjoy music, watches TV but doesn't take part in much else. She is in an assisted living facility who try to keep her as involved as possible. She does massage, physio etc as well to help with keeping her limber.
- Eating is difficult if not in finger food type portions. Otherwise she is assisted to eat.
- Cards, pictures and letters read to her have all been met with a happy reaction

So, if any of you have any recommendations as to what could be sent to perhaps give her something to enjoy from a family member that you know to be appropriate, I would really like to hear from you. Please pass this along to anyone else you know that has MS or has a family member with MS who could share their experiences. Thank you SO much everyone! Feel free to leave a comment, or email me directly at restperiod at gmail dot com.