What everyone needs to know about Multiple Sclerosis (MS)

What everyone needs to know about Multiple Sclerosis (MS)

What is it like to have MS?

What is it like to live with MS? In other words, what does it feel like? Firstly, it important to know that MS is different for everyone who has it. The exact symptoms, their severity and the course of MS are different for each person, however, there are similarities in the symptoms that people experience. Some people living with MS refer to it as an invisible condition because they appear to be healthy and there are no obvious physical clues. In fact, some people live for years with symptoms and try in vain to get a diagnosis of their symptoms. They felt almost relieved when finally given the diagnosis because they finally had a name for their condition.

When asked, people living with MS describe common problems and symptoms. They are summarized below:

  • Fatigue and weakness like having gone a long time without sleep and then walking uphill wearing a suit of armour and carrying a heavy load. Your whole body hurts and all you can do is sleep. It can be hard to wake up.
  • Unsteadiness Sometimes people think you are drunk because you seem uncoordinated and clumsy with difficulty in walking a straight path — often bumping into walls and furniture.
  • Muscle Spasms cause sudden involuntary twitches and kicks at any time. Severe, painful cramping can occur in any muscle without warning.
  • Numbness and tingling like the feeling of an arm of foot falling asleep. This feeling can be in arms, legs, face and anywhere on the body.
  • Vision Problems such as seeing double and blurry vision are common and often one of the early symptoms of MS. Sometimes colours seem not to be as bright as they should.
  • Dizziness Sometimes a tilt of the head causes the room to spin. Vertigo and disorientation are common.
  • Bladder and Bowel Issues mean that you always have to know where the washroom is. The need to go can happen fast. Availability of washrooms and anticipated line lengths factor into the decision to go out or not.
  • Cognitive Problems cause difficulty remembering things. Can have difficulty in problem-solving because it is hard to concentrate.
  • Pain Neuropathic pain can be excruciating and does not respond to normal pain relievers. Pain is a constant companion.
  • Swallowing Problems Chewing and swallowing food can be difficult affecting food preparation and food choices. You might just have the soup.
  • Temperature Sensitivity Heat causes symptoms to worsen. Overheating can be unbearable even will only small increases in temperature. Cold can also be very uncomfortable.
  • Speech Problems It can be difficult to remember words. Your voice is soft and weak and can be difficult for others to understand.
  • Itching can be relentless on any part of your body. Skin gets scratched raw.
  • Tremors You can have bouts of shaking that can't be stopped.
  • Breathing It can feel as though you are being squeezed too tightly. Muscle weakness in ribs and diaphragm can make breathing difficult.
  • Headaches Frequent headaches caused by many triggers: lack of sleep, medication, food, stress.
  • Seizures Zoned out moments are not uncommon. Sudden weakness and dropping to the floor happens. Seizures can also be the shaking kind.
  • Emotional Changes Mood swings and strong sometimes inappropriate emotional reactions can happen.
  • Sexual Dysfunction All the problems listed conspire to make it difficult to be intimate.

MS is not fatal for the vast majority of people living with the disease. Most people who have MS can expect a normal or near-normal lifespan, thanks to improvements in symptom management and the MS disease-modifying therapies. However, it can be a lifetime with debilitating symptoms.

 

Incidence of MS

More than 2.3 million people around the world have MS. About 23 000 live in Australia. Canada has the highest rate of MS in the world with about 100 000 diagnosed. The actual total number may be much higher as it is likely that many people with MS remain undiagnosed in certain parts of the world.

Although MS is found in all parts of the world, its prevalence varies greatly, being highest in North America and Europe, and lowest in sub-Saharan Africa and East Asia. It is almost unheard of in certain populations such as the Inuit, New Zealand Maoris and Australian Aborigines.

Studies have helped to identify factors that may be related to the risk of developing MS, such as latitude, migration patterns, genetics and infectious processes.

MS affects at least twice as many more women than men, suggesting a role of hormones in the disease process.

Most people are diagnosed between the ages of 25 and 35, although around three to five per cent of people with MS are diagnosed as children, and it can occur in much older adults.

 

What is MS?

Myelin protects the nerve fibres in the central nervous system (brain, spinal cord, and optic nerves). Myelin is a fatty material that insulates nerves acting much like the covering of an electrical wire. Myelin allows a nerve to transmit its impulses rapidly. When nerve fibres are protected with Myelin, nerve impulses are smooth and efficient allowing smooth, rapid and coordinated movements with little conscious effort. MS is an inflammatory demyelinating condition of the central nervous system. The disease attacks the myelin.

In MS, the immune system, which normally helps to fight off infections, mistakes myelin for an invader and attacks it. Researchers do not know what triggers the immune system to attack myelin, but it is thought to be a combination of genetic and environmental factors.

In MS, the loss of myelin is accompanied by a disruption in the ability of the nerves to conduct electrical impulses to and from the brain. This produces the various symptoms of MS. The places where myelin is lost (plaques or lesions) appear as hardened (scar) areas: in multiple sclerosis these scars appear at different times and in different areas of the brain and spinal cord. The term multiple sclerosis means "many scars".

For some people, MS is characterised by periods of showing symptoms and then no symptoms while, for others, it progresses. For everyone with MS, it makes life unpredictable.

The course of MS is unpredictable. Some people may feel and seem healthy for many years following diagnosis, while others may be severely debilitated very quickly. Most people fit somewhere between these two extremes.

Some MS symptoms are immediately obvious. Others, such as fatigue, altered sensation, memory and concentration problems, are often hidden symptoms. These can be hard to describe to others, and sometimes family and employers do not understand the effects these have on the person with MS and on work, social activities and quality of life.

 

What Causes MS?

Despite decades of research, the cause remains a mystery. The best current evidence suggests that lifestyle, environmental, genetic and biological factors all contribute. All these areas are being actively examined. Studies funded by the MS Society are asking if certain risk factors, such as gender, age, family history or lifestyle habits impact a person’s susceptibility to MS.

Genetic factors

MS is not thought to be a hereditary disease. However, the risk of getting MS is higher in relatives of a person with the disease than in the general population, especially in the case of siblings, parents and children.

However, there is only around a two per cent chance of a child developing MS when a parent is affected. It is important to consider that identical twins, who have the same DNA, do not always both have MS. There is around a 20-30% chance of someone developing MS if their identical twin is affected. This is why researchers agree that MS is not simply a genetic disease.

Specific genes have been linked with MS. Most are genes that influence specific components of the immune system. These are also the genes that seem to contribute more significantly than others to the susceptibility of the disease. The search for MS genes is important because their discovery will provide vital information on which biological mechanisms influence the disease. This will lead to a better understanding of what causes MS and to the development of new approaches to treatment and prevention.

Environmental Factors

Various environmental factors – infectious and non-infectious – have been proposed as risk factors for MS.

MS is more common in people who live further away from the equator. The reason for this is not clear, but decreased sunlight exposure has been linked with a higher risk of MS and there is growing evidence that a lack of vitamin D is linked to a range of conditions including MS. As we get most of our vitamin D through exposure to sunlight, low sun exposure and subsequent vitamin D insufficiency has been proposed as one explanation for this effect. This effect may also explain the recent observation in (study in London, England) that there is a higher MS risk in people born in April and May, and a reduced risk in those born in October and November.

Many microbes (particularly Epstein Barr Virus) have been proposed as potential triggers for MS, but none have been proven. Age at exposure to infection seems to play an important role, and it has been shown that moving at an early age from one location in the world to another alters a person’s subsequent risk of MS.

 Smoking is another environmental factor that seems to be strongly associated with MS.

 

How is MS Diagnosed?

MS is complex and can cause many different symptoms. Early MS may present itself as a history of vague symptoms, which may occur sporadically over a prolonged period of time and could often also be attributed to a number of other medical conditions. Invisible or subjective symptoms are often difficult to describe to doctors and health professionals. It is not unusual for a diagnosis to take several months.

Even when a person shows a "classic" pattern of MS-type symptoms, the symptoms must conform to agreed criteria (called the McDonald criteria) before a doctor or neurologist can diagnose clinically "definite" MS.

In 2001, the International Panel on the Diagnosis of Multiple Sclerosis updated the criteria to include specific guidelines for using magnetic resonance imaging (MRI), cerebrospinal fluid (CSF) analysis, and visual evoked potentials (EP) to speed up the diagnostic process.

There are a range of tests that can be used to find out if someone has MS or not, but there is no single test to diagnose MS which is conclusive on its own.

 

Symptoms

Multiple sclerosis is a variable condition and the symptoms depend on which areas of the central nervous system have been affected. There is no set pattern to MS and everyone with MS has a different set of symptoms, which vary from time to time and can change in severity and duration, even in the same person.

There is no typical MS. Most people with MS will experience more than one symptom, and though there are symptoms common to many people, no person would have all of them.

Symptom management is often a mix of drug treatments where possible, combined with physical therapies, such as physiotherapy or occupational therapy, and lifestyle changes and supports.

 

Types of MS

The course of MS is unpredictable. Some people may feel and seem healthy for many years following diagnosis, while others may be severely debilitated very quickly. Most people fit somewhere between these two extremes.

Although every individual will experience a different combination of MS symptoms, there are a number of distinct patterns relating to the course of the disease:

Relapsing-remitting MS

In this form of MS there are unpredictable attacks (called relapses) during which new symptoms appear or existing symptoms become worse. Relapses can last for varying periods (days or months) and there is partial or total recovery (remission). The disease may then be inactive for months or years.

About 85 per cent of people with MS are initially diagnosed with relapsing-remitting MS.

Primary progressive MS

About 10 percent of people with MS are diagnosed with this form of MS, which does not show distinct attacks, but with slow onset and steadily worsening symptoms. There is a build-up of disability which may level off at some point or continue over months and years.

Secondary progressive MS

For most people who initially have relapsing-remitting MS, there is the development of progressive disability later in the course of the disease. This often occurs with superimposed relapses and no definite periods of remission.

Progressive relapsing MS

This is the least common subtype (about 5 per cent). Individuals show a steady neurologic decline with a clear superimposition of attacks. There may or may not be some form of recovery following these relapses, but the disease continues to progress without remissions.

Pediatric (childhood) MS

Though MS in children is rare, an increasing number of children across the world are being diagnosed with MS. Neurologists are finding that MS in children has different characteristics and to date, no therapies have been tested for being safe or effective for the treatment of children with MS.

 

Course of MS

It is impossible to predict the course of MS accurately for any individual, but the first five years give some indication of how the disease will continue for that person. This is based on the course of the disease over that period and the disease type (relapsing-remitting or progressive). The level of disability reached at endpoints such as five and ten years is thought to be a reliable predictor of the future course of the disease.

Age at onset and gender may also be indicators of the long-term course of the disease. Some research has indicated that younger age at onset (under 16 years of age) implies a more favourable prognosis. However,  a young adult, living with MS for 20 or 30 years may result in substantial disability even if the progress towards disability is slow.

Other research has indicated that late onset (over 55 years of age), particularly in males, may indicate a progressive course of the disease.

Treatment and Therapies

At present, there is no cure for MS, but management of the disease includes drug treatments to speed up the clinical improvement from relapses, medications that reduce the risk of further relapses (commonly known as disease-modifying therapies), and therapies that alleviate and improve various symptoms. Successful management of MS also includes a healthy diet, exercise and rehabilitation.

MS is very complicated and therefore treatment strategies are too -- to complex for the scope of this report.

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Beautiful WrapMeCool products are available as Wraps or Neck Scarves and whatever the occasion, there is a colour that will perfectly complement your wardrobe.

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Measurement and Sizing

Measurements

WrapMeCool® is designed to be worn over the arms.
Measure as shown in the picture making sure the tape measure is across the bust line and outside the arms.

 

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wrap sizing chart
neck scarf sizes

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