Australasian Multiple Sclerosis Network of Care Multiple Sclerosis Network of Care Australia

A Voice for People Affected by MS


 
 
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Multiple Sclerosis?

'Towards Better Understandings'

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What is Multiple Sclerosis? - Towards Better Understandings
Typical Symptoms News Headlines Living with MS Quick Reference Guide
 
Multiple Sclerosis derives its name from the scars/lesions (sclerosis) symptomatic of its presence.  It is a progressive chronic (long lasting) disease. While the underlying cause/s of MS are yet to be clearly established It is frequently triggered by inflammation. The presence of iron laden lesions differentiates MS from similar chronic conditions.  
MS is one of the most common neurologically associated diseases among young adults and is more common in women than in men. It primarily affects people between the ages of 20 and 40. 74% of all cases are women. Less than 5% of patients present with MS before the age of 16.
The Failing Gatekeeper - Cerebrovascular Endothelial cells
In March 2017, in a publication titled "Emerging Roles of Endothelial Cells in Multiple Sclerosis Pathophysiology and Therapy", Dr Steve Alexander, President, International Society for Neurovascular Disease (ISNVD) summed up MS as follows "the complex pathogenesis of MS can only be appreciated when and if vascular contributions are recognized as a significant part of MS etiology. Indeed, many novel therapies for MS target the mechanistically relevant vascular inflammatory features of these conditions and implicate cerebrovascular endothelial cells as the failing gatekeeper of the blood-brain barrier "
Dr Alexander's comments reinforce those of MS neurologist Lawrence Steinman (Stanford University) when he said (January 2017) "endothelial cells form a unique blood–brain barrier that is broken down in multiple sclerosis. Disruption of the blood–brain barrier is a defining and early feature of multiple sclerosis that directly damages the central nervous system , promotes immune cell infiltration, and influences clinical outcomes".
Asking the Right Questions
He went on to say "'there is an urgent need for new therapies to protect and restore BBB function, either by strengthening endothelial tight junctions or suppressing endothelial vesicular transcytosis''.  More broadly are the questions "What causes endothelial breakdowns?" and "What can be done to better manage such causes?" Shutting the gate after the event may assist but it is not the answer.
Myelin repair is a Major Challenge
The progressive outcomes of MS include the loss of myelin - which is essential for regulating the flow of the brain's messages. Loss of myelin is not exclusive to MS. It surrounds nerve fibres in the central nervous system and acts as an insulator to help conduct nerve pulses or messages from nerve endings to the brain and visa versa. Scarring of the myelin causes a slowing down, distortion or, in severe cases, complete blockage of the flow of messages from the nerves to the brain and back again. Identifying processes that regulate myelination is a major challenge
Functional Impairments - contributing factors
The impact of MS associated functional impairments, be they mild, moderate or severe, frequently escalates exponentially over time.  While It is often hypothesised that  auto-immune factors may be involved, underlying cardiovascular disorders are also identified as significant contributing factors.  The autoimmune hypotheses. whereby the body produces an inflammatory reaction against its own tissue (in this case myelin) appears somewhat contradicted by March 2017 research that identifies the positive role of the immune system (Tyro3 receptor) in regulating myelination.
Also In July 2017 Oxford University researchers provided unequivocal evidence that, in the case of those with progressive MS, the blood clotting protein fibrinogen is extensively deposited in their motor cortex, where regulation of fibrinolysis appears perturbed. This severe fibrin(ogen) deposition is accompanied by significantly reduced neuronal density. The role of the primary motor cortex is to generate neural impulses that control the execution of movement. Researchers said future studies are needed to clarify the source and acknowledged neurotoxicity of fibrin(ogen), and its potential impact on clinical disability - find out more.
What are the Root Causes of MS?
While these two scenarios are not necessarily mutually exclusive long term studies are yet to support the auto-immune hypothesis. For example (1993-2017} studies demonstrate that immunosuppressant drugs do not impact upon long term disease progression nor do they reverse the damage to restore function. It is also established that ''dampening down'' the immune system brings with it risks of serious side effects. 
Concerns are also expressed that such treatments not only do not address underlying vascular problems but also, in some cases, may exacerbate such problems. Notwithstanding, such treatments continue - especially for those with the relapsing/remitting MS sub-type with the aim of reducing the frequency/impact of exacerbations.
Conversely there is significant evidence (2011 - 2017) that the impact of the most common symptoms identified by those living with MS is alleviated through the non pharmaceutical treatment of the  blood flow irregularity known as Chronic Cerebro Spinal Venous Insufficiency (CCSVI)  - a condition  identified as present for more than 80% of the MS population (many thousands across all MS sub-types) tested to date. The most dramatic and immediate benefits are experienced by those with relapsing/remitting MS.
A Functional Medicine Perspective
A range of underlying issues potentially contribute to MS progression and symptom severity. These may include all or any of the following - acting individually or in combination:

Distance from the equator (insufficient sunshine exposure), undiagnosed/unresolved cardiovascular issues (congenital, injury related or otherwise acquired),
medication issues (including side effects), lifestyle choices,
unresolved chronic infections (such as Chlamydophila Pneumoniae (Cpn), dietary imbalances (including gluten intolerance), "negative" stress, smoking and inadequate sleep. For some Interesting observations about the importance of addressing such issues see the document "10 Strategies to reverse Autoimmune Disease" - click here.
Attention to Lifestyle Issues
Attention to a such issues can be significant in managing the most common disabilities reported by those with MS  - as well as potentially partially ''winding back'' some damage already occasioned. Given that vascular irregularities are consistently shown to contribute to disease progression, it makes good sense to adopt lifestyle choices that enhance vascular health - rather than place additional pressure on what, for many, may already be a compromised vascular system.  Ownership of decision making (positive stress), vascular screening, appropriate exercise, proper nutrition and effective sleep spring to mind as key elements of this approach.
How is MS Currently Diagnosed?
While it is yet to become widely available Ultra-High-Field 7-Tesla MRI is the way of the future in confirming an MS diagnosis - more about this technology
For the moment and because of uncertainty about the origins of MS it is not easy to diagnose.  It may show up differently in each person. MS is typically diagnosed by observing the occurrence of symptoms over a period of time, combined with the results of medical tests. In addition to neurological examination and a comprehensive medical history common medical tests include, magnetic resonance imaging (MRI), lumbar puncture and evoked potentials - read more about diagnosis
It is also important to eliminate other chronic illnesses sometimes misdiagnosed as MS. For all of these reasons there is frequently a delay between the appearance of symptoms and the diagnosis of MS. This is a very important time for newly diagnosed people with MS which, if not managed properly, may have negative long term effects for the individual and their family. There are compelling reasons to include comprehensive vascular (CCSVI) screening as an integral part of this process.
Are there Different Sub Types or Stages of  MS?
While MS can follow different patterns for different people, its clinical course has been classified under 4 broad categories, each of which might be mildmoderate or severe. Based upon pre CCSVI treatment understandings they broadly are:
 
Category

Population

Relapsing Remitting A relapsing-remitting course (RRMS) characterized by partial or total recovery after attacks (also called exacerbations, relapses, or flares). This is the most common form of MS. Seventy to seventy-five percent of people with MS initially begin with a relapsing-remitting course.  A significant percentage of whom subsequently progress to secondary progressive MS within 10 years of diagnosis.  

Secondary Progressive

A relapsing-remitting course which later becomes steadily progressive. Attacks and partial recoveries may continue to occur. This is called secondary-progressive MS (SPMS). Of the 70-75% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years; 90% within 25 years.

 

Primary Progressive

Symptoms generally do not remit. Fifteen percent of people with MS are diagnosed with PPMS, although the diagnosis usually needs to be made after the fact when the person has been living for a period of time with progressive disability but not acute attacks. 

 

Progressive Relapsing

A progressive course from the outset which is also characterized by obvious acute attacks. This is called progressive-relapsing MS (PRMS) and it is quite rare. Approximately 6-10% of people with MS appear to have PRMS at diagnosis. 

 
Important Variables Factors that further accelerate MS prevalence and progression include distance from the equator, misdiagnosis, undiagnosed/unresolved cardiovascular issues, medication issues and lifestyle choices. More about underlying variables.  
 What are Typical  MS Symptoms and Issues?
At an individual level symptoms and their severity can be unpredictable. They may include loss of balance and co-ordination, diminished vision, weakness of limbs, extreme fatigue (especially during hot weather), constantly cold extremities, impaired speech and loss of bladder control. A person with MS might experience one, several or all of these symptoms, depending on the nature and extent of underlying issues. There is however significant commonality on the overall range of issues experienced by MS populations. Examples include 87% of pwMS experience more than average levels of fatigue, 68% experience heat intolerance and 58% can experience cognitive problems. More than 20 issues (each of which can be mild, moderate or severe) are so identified. More about this research and associated treatment modalities.
Progressive Impact of Bloodflow Disorders
There is building evidence that the levels of disability (mild, moderate or severe) across all MS sub-types are related to the progressive nature of underlying bloodflow disorders and the consequences thereof. In this context the identification of CCSVI conditions could be seen as a red light signaling a dangerous escalation of an insidious process that includes endothelial breakdown, the formation of iron laden lesions and myelin damage..
MS Progression
MS progresses more rapidly where (potentially treatable} vascular irregularities are also present. In terms of mobility, longitudinal studies show that, on average, around 50% of people with MS are independently mobile after 15 years - many of whom live normal and productive lives. At the 20 year mark the progression of MS is often regarded as chronic. 
 At the 20 year mark population studies show that 35% of people living with MS are significantly to severely impaired. Lifetime Continuous Care programs delivered by multi-disciplinary teams are identified as essential for those with more advanced forms of MS. More about the course of MS and prognosis.
Genetic  Linkages
Epidemiological surveys have determined that genetic linkages can increase an individual's risk of developing MS.  A study published on 30 September 2013 identified 110 genetic variants associated with MS – previously thought to be 57. Although each of these variants individually confers only a very small risk of developing multiple sclerosis, collectively they explain approximately 20 percent of the genetic component of the disease. The genes implicated show substantial overlap with genes known to be involved in other autoimmune diseases such as inflammatory bowel disease, Crohn's disease and celiac disease. More about ongoing genetic issues and MS.
Demographics  - In What Geographic Areas is MS most Prevalent and Why?
 MS is more prevalent and progresses more rapidly in geographical areas further away from the equator. Access to sunshine is a very significant influencing factor. Research indicates that sunlight may protect against a wide range conditions, including multiple sclerosis. When our skin is exposed to the sun a compound - called nitric oxide - is released in our blood vessels which causes blood vessels to widen. Associated research identifies Vitamin D as promoting vascular regeneration after vascular injury whereby it acts directly on endothelial cells to prevent vascular leak. Researchers said "these findings may help explain the clinical correlations between low serum vitamin D levels and the many human diseases with well-described vascular dysfunction phenotypes''.

In Australia it is reported that in excess of 1000 people are newly diagnosed each year, which exceeds the annual population growth rate. The 2015 population nationally is thought to be around 26,000. . Click here to find out about MS populations and prevalence rates in each area across Australia.
Quality of Life when Living with MS - Culture and Value Systems have Changed
The World Health Organisation defines Quality of Life as ''an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns".
The relatively recent knowledge that attention to bloodflow irregularities can provide significant relief from the most common MS symptoms arguably changes the dynamics of "the culture and value systems in which pwMS live'' and their associated goals, expectations, standards and concerns
This is typified by Kerri Cassidy's selection as the winner of Australia's National Award for Excellence in Justice and Rights Protection. This is a reflection of her determination and commitment to raising awareness about the need for justice and rights protection of people with Multiple Sclerosis (MS) through the equitable access to Chronic Cerebro Spinal Venous Insufficiency (CCSVI) treatment"
QoL Background Research
In health services generally and medical practice in particular, QoL tends to be equated to physical health, despite that fact that it has been well demonstrated  that quality of life and health status are quite distinct concepts. In reality, this “health-related” approach to QoL underestimates the challenges faced by pwMS with activities of daily living and basic social routines. More recent research suggests that it has stronger associations with psychological factors.
Role of Stress and Hope  - Potentially Potent Protective Resources
Despite many doctors suggesting stress plays no part in the development and course of MS, there is a large and coherent medical literature showing that stress can precipitate MS and trigger relapses. A study (March 2014) from preventive medicine researchers in Chicago is the first to examine MRIs of PwMS and correlate stressful life events with appearance of lesions on MRI. As part of a study on stress management therapy in 121 PwMS, the researchers asked participants about stressful life events, categorising them as negative or positive.
The researchers found that major negative stressful life events resulted in 77% more new MRI lesions over the subsequent 4-9 weeks, and 57% more new or enlarging T2 lesions (the so-called 'black holes' that are closely associated with worsening disability).
Perhaps the surprising part of the study was that positive stressful life events had a protective effect; those with a positive event had 47% fewer new contrast-enhancing lesions on MRI - More about this study. 
Aspects of this research echo January 2014 findings by Australian researchers who observed ''those with high hope had more positive state of mind, greater life satisfaction and less depression. Interestingly hope buffered the effects of high stress, so that under high stress, there was an even greater difference in favour of those with high hope, and they were considerably less anxious''. They went on to say "confirmation of the stress-buffering effects of hope in the context of chronic illness is noteworthy - hope is a potent protective resource for pwMS''. - all about stress and MS
Ownership of Decision Making - It's Your Choice as a Basic Human Right
The literature emphasises the importance of ensuring that decisions relating to MS management, including potential treatment options, are the responsibility of the person diagnosed with MS in consultation with their medical advisors. Implicit in this expectation is a need to ensure, during the diagnostic processes and subsequently, that such persons have ready and appropriate access to impartial, independent and unbiased information on all of the aforementioned topics. To do otherwise is in contravention of basic human rights.
Adapting to Change is Not Always Popular
The rapidly increasing understandings regarding the very significant involvement of the vascular system in MS progression, simple as it is, brings with an immediate and steep learning curve for many. Adapting to change is not always popular. All too often there are reports about a significant lack of such information and/or misinformation - at times from otherwise seemingly trusted sources - examples are here, here and here. Better education, including for GP's, is identified as one of a range of issues designed to better support this right of individual choice. An Open Letter on this topic to the Australian Health Minister is at http://www.msnetwork.org/electorates/openletter.htm
Protecting the Vulnerable
Six years have passed that these issues were first drawn to the attention of the Australian Parliament in conjunction with World MS Day 2011. Despite a subsequent submission to the 2015 Parliamentary Health Enquiry (submission 15) and numerous associated representations it remains a matter of record that the Parliament has been unable to maintain enduring leadership in intervening to protect the rights of the very vulnerable amongst those diagnosed with MS in accessing appropriate information and/or in accessing screening for these potentially devastating vascular disorders.
 

 

 

 

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