Diagram of the ODFS

They found that people with multiple sclerosis using the stimulator increased walking performance, compared to the exercise group and also experienced fewer falls.

authors: Esnouf J, Taylor P, Mann G, Barrett C.

source: Mult Scler. 2010 Jul 2

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Total costs of MS varied widely across countries for which studies have been conducted but are substantial in all countries. The total (prevalence weighted) average annual cost per person with MS in 2007 (based on existing studies from 15 countries) was $41,334. Over a lifetime it is estimated that the average financial cost of MS in high income countries is more than $US 1.2 million per person. Loss of employment, or early retirement, is considered the single largest cost factor contributing to this financial cost.
Costs of MS
Types of costs were divided into three broad categories: direct, indirect and intangible costs, with the view to understand more fully the kinds of costs that MS demands of the individual and society.

Direct costs
Direct costs are those incurred by the individual or society as a direct result of the disease. In the report these costs were divided into medical and non-medical subcategories and cover everything from visits to neurologists to the costs of installing wheelchair ramps at home, and the value of care-giving provided by family, friends or professional carers. The responsibility of caring for the person with MS often falls on those closest to him/her and this can affect the carers’ ability to work. Often carers are forced to work shorter hours in order to care for their loved one, or increase working hours to compensate for their loss of income. For carers it is essential that employers are understanding, supportive, and flexible where possible to enable carers to continue working in order to support those who cannot work themselves. Direct costs accounted for 26% to 87% of the total costs of MS

Indirect costs
Indirect costs, which accounted for 13% to 74% of total MS costs, are those costs which are related to MS but cannot be attributed directly to the disease itself. Loss of work is often the most costly contributor to the overall cost of MS since the average age of onset of MS is 29.2 and can dramatically affect or curtail the working life of the individual. The symptoms of MS, which can include physical disability, fatigue, cognitive impairments, transportation difficulties and speech impairments, can make finding and retaining employment difficult especially where employers do not support the changing needs of the employee.

The costs incurred can include short-term and long-term absence from work during periods of relapse, reduced working hours, changing the type of work to a less physically challenging and stressful nature (often at a lower pay), and early retirement.

Intangible costs
Intangible costs are those costs that are often most difficult to measure and can include changes to the quality of life of both the individual and his/her friends and family. In the 13 studies that were analysed with relation to quality of life, several patterns emerged. Firstly, the impacts on physical functioning are larger than those on social functioning or mental functioning, and secondly that physical quality of life deteriorates as the disease progresses over time. Significant impacts on social and mental functional were also found over time. These studies show that a diagnosis of MS does not necessarily affect the ability of the individual to engage socially or mentally, but that physical engagement may be the biggest barrier to activity that the individual faces – especially in the early stages of the disease. With this in mind, it is important that employers offer a variety of solutions to make work more accessible to those with physical disabilities.

You can read the full article here

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Introduction

Multiple sclerosis presents in various ways and subsequently shows variable disease courses. If we knew early on what the disease course for Multiple Sclerosis would be then we could better target the medication in each individual case. To date it has been unpredictable right from disease onset but, knowing the disease course is of crucial importance in guiding treatment.

Now “The Department of Neurosciences” at Cardiff University has recently been looking into factor H as a biomarker for multiple sclerosis and the findings are promising.

Effective and accessible biomarkers are needed in order to stratify (separate into groups) patients and inform treatment. The team at Cardiff University decided to look into factor H as such a marker. Regulator factor H, has recently been implicated as a biomarker in other chronic inflammatory central nervous system conditions. Could it identify or predict specific pathological processes and outcomes in multiple sclerosis?

Method

They measured factor H in blood serum from 350 patients with multiple sclerosis classified according to disease course and relapse status. Controls were found for variables including disease duration, age, gender, disability and treatment. I have decided not to go into the full method in this document as the details will be somewhat turgid to the average reader. However, the findings are fairly clear and very encouraging.

Results

1) Factor H levels were significantly higher in progressive disease compared to controls and relapsing patients. Thus factor H levels were capable of distinguishing secondary progressive from relapsing remitting disease (excluding patients in clinical relapse)

2) Acute relapse was also associated with temporarily increased factor H levels compared to stable relapsing disease.

3) In clinically stable patients, factor H levels remained constant over 1 year but in patients in transition from relapsing to progressive disease, factor H levels significantly increased over a period of 2 years. This is a crucial point as the transition between relapsing and progressive signals the need for therapy change.

Conclusion

Serum factor H could be an effective indicator of progression and a practical and accessible tool to split patients into groups and to predict disease course, Once we have this information we have objective evidence which can help guide therapeutic decisions. As we have known for some time, the earlier you can pick up a disease pattern the better chance of success you have with the treatment.

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Introduction

Vascular co-morbidity means that as well as MS you have  hypertension, hypercholesterolemia, diabetes, or heart disease too. It has recently been found that whether present at symptom onset, diagnosis, or later in the disease course, it  is associated with a substantially increased risk of disability progression.

Who found this ?

Published in Neurology. 2010 Mar 30;74(13):1041-7. was a study by

Marrie RA, Rudick R, Horwitz R, Cutter G, Tyry T, Campagnolo D, Vollmer T.

Health Sciences Center, Winnipeg, Canada.

Background

On October 29 in Neurology, researchers outlined how co-morbidities may contribute to diagnostic delay in multiple sclerosis (MS) and increased disability at diagnosis. But Vascular co-morbidity adversely influences health outcomes in several chronic conditions so it became a question that needed to be answered about MS.( Vascular co-morbidities are common in multiple sclerosis (MS), but their impact on disease severity was unknown).

It could be that these “vascular co-morbidities” may contribute to the poorly understood variability in MS disease severity. So,  A total of 8,983 patients with MS enrolled in the North American Research Committee on Multiple Sclerosis Registry participated in this cohort study.

Method

Time from symptom onset or diagnosis until ambulatory disability was compared in these 8933 patients with or without vascular co-morbidities to determine their impact on MS

Models were adjusted in the analysis for sex, race, age at symptom onset, year of symptom onset, socioeconomic status, and region of residence.

Results

Participants reporting one or more vascular co-morbidities at diagnosis had an increased risk of ambulatory disability, and risk increased with the number of vascular conditions The median time between diagnosis and need for ambulatory assistance was 18.8 years in patients without and 12.8 years in patients with vascular co-morbidities.

CONCLUSIONS

Vascular co-morbidity, whether present at symptom onset, diagnosis, or later in the disease course, is associated with a substantially increased risk of disability progression in multiple sclerosis. The impact of treating vascular co-morbidities on disease progression deserves investigation as treatment of vascular co-morbidities may represent an avenue for treating MS

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Now it seems to me that there is nothing more noble in the human condition than the ability to laugh at ourselves. Sounds like Melanie did this too. She is a normal person who happens to have a disability. This does not mean everybody should tip toe around her in case they say the wrong thing. If she was hurt it would be a different matter but since she wasn’t then yes, it was funny, could have happened to anybody  The apology she received was probably politically driven so doesn’t carry much weight anyway.

If I fall  over I’d rather laugh than cry.

If I misread something because of my eyesight problems  I’d rather laugh than cry.

If my coffee shimmers when I pick it up and my son is amused I’d rather laugh than cry.

There is time enough to cry, when the fatigue kicks in, when the pain kicks in, when the vertigo kicks in, when my bladder gives up and when my eyesight brings down the curtain.

Let’s laugh while we can and let’s share that laughter with the people around us.

I’d like to hear your views on his matter so please leave a comment below

.

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These results suggest that UVR is likely suppressing the disease independent of vitamin D production, and that vitamin D supplementation alone may not replace the ability of sunlight to reduce MS susceptibility.

This of course reinforces the fact that there is a much higher incidence and prevalence of MS as you move away from the equator

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One patient died from a brain haemorrhage.

Another required emergency open heart surgery

The article on the MS Society site can be seen here

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“Interferon beta (IFNb) is a first-line treatment for people with MS. However, increasing evidence suggests that the presence of neutralising antibodies during treatment is associated with a reduction in treatment efficacy. The authors of this study found that anti-IFNb neutralising antibodies could persist after treatment cessation and were associated with higher disease activity and poorer clinical outcome.”

The antibodies are associated with overt clinical disease activity. This is made apparent by an increase in relapse rate and faster disability progression and is supported by the observed need for more aggressive therapy after interferon beta treatment cessation. Prospective studies are warranted to confirm these results.

authors: van der Voort LF, Gilli F, Bertolotto A, Knol DL, Uitdehaag BM, Polman CH, Killestein J

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Epidemiology

• MS is a global disease – no country that responded to our survey was free of MS

• MS is a disease more common among women than men

• Symptoms appear at around an average of 30 years of age

• The survey revealed the geographical patterns associated with the disease

• Under-recording is likely in many tropical/equatorial countries

• There is a lack of reliable, valid and robust data from epidemiological/economic

impact studies/reports published in medical literature (especially in Africa and parts

of Asia where the prevalence is reported to be low) •

MS Organisations

• Many countries in the world have no patient-driven support for people with MS

Diagnosis

• The availability and accessibility of MRI technology varies widely

• Time from onset of symptoms to diagnosis varies widely – often drawn out over

many months or years

• Inequalities in global wealth impact on the provision of diagnostic services

Information

• There are inequalities in the provision of information – in many cases the gap

between information required and received is vast

Support and services

• The needs of people with MS do not inform decision making, the implications of

which will ultimately improve their quality of life

• Health care professionals are not receiving any (or enough) training to help them

identify and treat people with MS

• There is a lack of public and professional awareness of MS and its impact

• There is little understanding of the socioeconomic costs of MS to individuals,

families, carers and the community

• Without adequate education, advice and support, people with MS are unaware of

how best to cope with their MS and how to remain in education or employment

• In many countries mutual support groups are not available

• In many countries no aids or adaptations are available from any source

• Accessible public transportation is often not available or difficult to use and there is

little alternative transport support

• There is poor provision of respite

• There is a need for better understanding of how transport and drug delivery options

will overlap with care and treatment possibilities

• Significant income inequalities exist around provision of treatment.

• People with MS actively seek and use a wide range of untested and un-trialled

‘complementary’ or ‘alternative’ remedies, therapies and treatments

• The findings confirm the key role played by MS organisations

Human Resources

• In some countries the lack of MS neurologists hampers diagnosis and the provision

of treatments and therapy

• There is a general lack of MS nurses

• There is an inadequate use of interdisciplinary teams in community settings

• MS is being managed in a medical, not social, model of care

Disability entitlements, legislation and insurance

• There is a need to integrate health and employment teams to improve vocational

rehabilitation

• People with MS are often dependent on disability entitlements and means-tested

cash assistance for their income.

• The eligibility standards, payment levels and administration of disability entitlements

and cash assistance have a direct impact on the quality of life of people with MS

Major issues

The major issues for people living with MS are

• lack of social support

• lack of information/education of the public about MS

• non accessibility/availability of disease modifying treatments

• issues related to employment

• health insurance/social security related issues

The major issues for health professionals involved in MS care are

• lack of information/education of health professional about MS,

• issues related to the time it takes to diagnose and the process/technology required

• the non accessibility/availability of disease modifying treatments

• lack of research in MS issues

• lack of health services, including MS centres

The major changes needed to improve MS care are

• inform/educate the public and health professional about MS,

• make health services, including MS centres and rehabilitation facilities,

accessible/available

• develop MS societies/support groups

• improve and expand research into MS issues

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The Glasgow researchers suggest that a mother’s lack of exposure to sunlight during her unborn baby’s development may explain the results, published in the European Journal of Neurology.

Vitamin D is produced through exposure to sunlight and has been linked to genes thought to be associated with MS. Scientists have suggested that a lack of vitamin D could trigger a predisposition to MS in a person’s genetic makeup.

Director for MS Society Scotland, David McNiven, said: “These intriguing results add weight to the evidence that the environment, and in particular sunlight, plays a part in MS and we’re pleased scientists are piecing together the complex puzzle of what may cause this debilitating condition.”

You may racall from an earlier article that research published in the journal PLoS Genetics suggests that vitamin D deficiency during pregnancy and the early years may increase the risk of the offspring developing MS later in life. See also the article about megadoses of vitamin D lowering the risk of relapse.

If you live ina temperate climate (as of course they do in Scotland) then it is always worth investing in an artificuial sunlight lamp to give you and possibley your child the best chance for a better life. You can find these in lot of places or go here to  chevk out the sunlight page

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