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physical changes in the brain.

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“Living with Multiple Sclerosis” by Piet Mesmer

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8. Myths and Facts about Multiple Sclerosis

Myth: There is no hope if diagnosed with Multiple Sclerosis

Fact: Though there is no cure for multiple sclerosis, there are

treatments which vary in effectiveness with each individual. There

are, at present, six drugs that have shown some ability to modify

the disease.

Myth: Multiple Sclerosis is a deadly disease.

Fact: There are available treatments that can help the person with

this disease lead a normal, active life. Deaths are only the result of

untreated complications such as kidney dysfunction and when

severe depression leads to suicide.

Myth: Multiple Sclerosis will ultimately land you in a wheelchair.

Fact: Early detection, proper therapy and treatment can make life

much easier for a person with multiple sclerosis. Many people use a

mobility aid, such as a wheelchair or powered cart, to conserve

energy for other activities.

Myth: People with Multiple Sclerosis should not be parents.

Fact: Multiple Sclerosis will do no harm to pregnancy and childbirth.

In many women, the symptoms are negligible during this period.

However, the risk of an attack is increased in the first six months

post delivery. There is a very small chance of the child inheriting the

problem of multiple sclerosis from the mother.

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Myth: People with Multiple Sclerosis should avoid working.

Fact: Many people still lead a very normal life despite their multiple

sclerosis. There is not enough evidence to prove that normal stress

and work pressures have any effect on multiple sclerosis. As many

as 30% of Multiple Sclerosis patients are still working full-time

without much trouble, even after years with the disease.

Other Facts about Multiple Sclerosis

1. Multiple Sclerosis may be malignant in rare cases and prove fatal.

2. Until the year 1993, there were no medicines, but there are

currently six approved drugs that are sometimes effective in

controlling the disease.

3. The chances of children inheriting the disease from their parents

are between 1% and 5%.

4. It affects 2.5 million individuals worldwide.

5. Canada has a significant risk of Multiple Sclerosis. More than

50,000 Canadians have Multiple Sclerosis.

6. Twice as many women as men suffer from this disease.

7. Multiple Sclerosis mostly strikes people between the ages of 20

and 40.

8. The symptoms of this disease vary. They may include blurred

vision, loss of balance, extreme fatigue, stiff muscles as well as

bowel and bladder difficulties.

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Part-III: Causes, Incidence, and Risk Factors

9. Causes of Multiple Sclerosis

The main cause(s) of multiple sclerosis in an individual are still

being studied. There has no been a particular gene found that is

responsible for causing this disease. But, research indicates that

people with some genetic susceptibilities have more chances of

developing this disease when there are environmental conditions

that are favorable for a virus or toxin attack.

It may be that viral infection, environmental factors, hereditary

factors, or a disorder of the immune system may be causes of

multiple sclerosis. Studies also indicate that it might be an

individual’s unique reaction to an infection by some substance or a

reaction within the nervous system that causes their body’s own

defenses to attack it.

Genetic Factors

Genetic factors could be responsible for making a person susceptible

to multiple sclerosis. But, the risk of someone inheriting all the

genetic factors responsible for multiple sclerosis is thought to be

less than 5%. Research continues in this field to identify the exact

genes responsible for multiple sclerosis.

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Infectious Agents

Viruses top the list of suspects for causing autoimmune response in

people who are genetically susceptible to multiple sclerosis. Factors

that favor this conclusion include:

1. The geographical distribution of the disease: The number of

multiple sclerosis-infected people is more as one moves away from

the equator in either direction.

2. Some studies indicate that multiple sclerosis might be a sexually

transmitted infection. Countries with some sexual freedom seem to

have a higher degree of multiple sclerosis in their population while

the disease is close to negligible in countries with traditional

cultures.

3. Viral similarity to myelin: Some viruses are quite similar to

myelin. This similarity may cause confusion to the immune system

and make the T-cells attack the body protein rather than viral

antigens. There are not sufficient results from studies to confirm

this as a prime trigger.

Three major suspects are:

1. HHv-6 or Herpes virus 6, a form of herpes virus that causes

rosella, a benign children’s disease.

2. Chlamydia pneumonia, a bacterium that causes constant

inflammation in small vessels.

3. Epstein-Barr virus, the virus that causes mononucleosis.

What causes multiple sclerosis in an individual is still a debatable

issue but the most widely accepted theory is that of an autoimmune

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disorder, where the components of the immune system fail to

recognize the normal body tissues and start attacking them as if

they were invaders.

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10. Cognitive Impairment in Multiple Sclerosis

What is cognitive impairment?

Cognition means thinking and includes our ability to pay attention,

learn, solve, express, and remember. These functions can be

impaired by multiple sclerosis.

Research led to the fact that this illness can affect the way the mind

works, particularly the cognitive power of the brain.

Almost one-half of people suffering from multiple sclerosis have

some cognitive impairment. As much as 80% of the people with this

disease show the signs of moderate symptoms, such as having

some difficulty when remembering a list of items to buy or

performing mental activities in a distracting environment.

The rest may suffer from a more severe condition and may even be

unable to work or do some of their daily activities.

Causes of Cognitive Impairment in Multiple Sclerosis

Stress, anxiety and depression can lead to us being unable to

remember or pay attention. The cognitive dysfunction in this illness

is due to the changes in the brain. Multiple sclerosis produces

lesions that affect the electrical impulses transmitted across the

nerve cells. A person with just a few lesions may not experience any

cognitive dysfunction but someone with many lesions could

experience marked cognitive dysfunctions.

Diagnosis of Cognitive Impairment

With the help of neuropsychological examination, medical

practitioners can diagnose cognitive impairment. A

neuropsychological examination is a series of cognitive tests.

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The results are compared to the results of a healthy individual of

same age and similar physical attributes.

Is Cognitive Impairments Inevitable with Multiple Sclerosis?

Cognitive dysfunction may occur very early in many people with

multiple sclerosis, but many people may have no such problems at

all. But, there is little relationship between the degrees of physical

disability and cognitive impairment.

Treating Cognitive Impairment in Multiple Sclerosis

At present, there are no medications for cognitive problems in

Multiple Sclerosis. Research is continuing to find ways of improving

memory functions.

Medications to Reduce Cognitive Impairments

At present, FDA has approved three medicines for treating patients

with Multiple Sclerosis; Avonex, Betaseron, and Copaxone.

Apart from medicine, there are cognitive retaining programs that

are available in most medical centers. There are exercises for the

brain, like doing crossword puzzles, reading, and other brain

stimulating programs. That may make a lot of difference to the

patients’ cognition power.

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11. Effects of Multiple Sclerosis

The Invisible Symptom Factor

The effects associated with multiple sclerosis are numerous.

Fatigue is frequently a symptom that brings much distress to

patients. Fatigue may occur in the person who is not showing any

signs of illness. Others often judge the fatigue in multiple sclerosis

as mere laziness and this can cause misunderstanding.

This disease is not fatal, but it can reduce the patient’s life by six or

seven years. About half the people with multiple sclerosis die from

the various effects of the disease.

Depression may increase any suicidal tendencies in the patient.

If your loved one, or you, suffers depression then you must seek

professional help.

Specific Effects of Multiple Sclerosis

1. Fatigue: Fatigue is one of the debilitating and common

symptoms of multiple sclerosis.

2. Loss of mobility and spasticity: Almost all people with

multiple sclerosis experience some loss of mobility in them.

Spasticity is one of the main symptoms of this disease. It is more

severe in the legs and torso.

3. Bowel and Urine dysfunction: There are chances of

constipation or fecal incontinence in a person with multiple sclerosis.

Urinary dysfunction occurs in almost two-thirds of people suffering

from multiple sclerosis. Many patients have difficulties controlling

when they urinate.

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4. Difficulty in swallowing: Many patients of this disease

experience difficulty swallowing and even chewing their food.

5. Lung problems: The weakening of muscles can create breathing

problems and makes coughing more difficult for the patient. The

patient may develop pneumonia and other lung complications.

6. Effects of cognitive impairment: At least 50% of people with

multiple sclerosis notice changes in their mental condition. This is

often problems with understanding, remembering, focusing, solving

problems and processing information in the mind as quickly as

before.

The following effects are associated with multiple sclerosis:

1. The multiple sclerosis patient often loses some of the quality

of their eyesight.

2. The patient may suffer from some paralysis.

3. The patients lifespan may be shortened by about six years.

4. Patients often complain of weakness in their muscles.

5. Some patients complain of hearing loss.

6. This disease may also cause involuntary twitching of muscle

fibers in patents’ limbs and rapid increase in the number of white

blood cells.

7. A few people suffer from fits.

8. There may brain failure in some instances.

9. Gliosis (swelling and scarring of astrocytes – important cells

in the patient’s brain and spinal cord) and Pseudobulbar palsy

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(difficulties with chewing and swallowing as well as emotional

outbursts) are also sometimes suffered by Multiple Sclerosis

patients.

10.

Multiple sclerosis can affect the cerebellum, a slightly

cauliflower-shaped part of the brain at the top of the spinal

column and this causes loss of co-ordination in the patient’s

movements.

11.

Damage to the nerves that help control the bladder

cause urinary problems.

12.

Tingling or burning sensations that are probably due to

nerve damage (Paresthesia) and constipation are associated

with multiple sclerosis.

13.

Dizziness

14.

Taste disturbance

15.

Eye problems, including Optic neuritis.

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12. Risk Factors for Multiple Sclerosis

These risk factors may indicate that someone has a significant

chance of getting multiple sclerosis. They do not definitely lead to

multiple sclerosis.

The risk factors or the conditions for multiple sclerosis are:

Environmental Susceptibility in multiple sclerosis

The US, Europe, Soviet Union and Canada had a prevalence of

multiple sclerosis in the mid 20th century. The number of multiple

sclerosis-infected people is more as one move away from the

equator in either direction. The study made in accordance with sex,

the disease has high prevalence among the women.

Genetic Susceptibility in MS

Twin studies that show a higher rate of multiple sclerosis present in

primary relatives indicate that genetic factors may be responsible

for up to 30 percent of multiple sclerosis.

Vitamin D and Sunlight

Vitamin D is necessary in the body; it helps cell maturation and the

responses of the immune system. Vitamin D, with the help of

sunlight, is converted to an active form. When the person is

suffering from multiple sclerosis, the body mistakenly produces anti-

inflammatory cytokines, Th2 cells and Th1 cells that reduce the

vitamin’s essential beneficial activity. Deficiency of vitamin D and

less sun exposure may increase the chances of multiple sclerosis or

change the course of the disease.

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It only takes 15 minutes per day outside to get enough vitamin D

from the sun. Some milk companies add Vitamin D to their milk.

Smoking and MS

There is evidence to indicate that smoking increases the risk of

multiple sclerosis. Smoking seems to worsen the symptoms of

multiple sclerosis. Multiple sclerosis is high amongst smokers.

Viral Triggers and MS

Viral infection may be the most important trigger of multiple

sclerosis. A prevalent childhood infection may lead to multiple

sclerosis in adolescence.

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13. Genetic Factors for Multiple Sclerosis

Genetics may have a major role to play in determining multiple

sclerosis. There is a higher chance of developing multiple sclerosis if

the disease exists in family members. That chance is even higher if

the person suffering is your first-degree relative; brother, sister or

parents.

There has been no identification of a particular gene causing

multiple sclerosis. Researches are continuing in this area.

Some populations, like Gypsies, Eskimos, and Bantus, may never

develop multiple sclerosis. Similarly, Native Indians, South

Americans, Japanese and other Asians have less chance of getting

multiple sclerosis.

It is unclear whether this disease is mostly due to genetics or

environments.

Twin studies are the classic method of determining whether the

genes have any influence on a disease. The concordance rate is a

measure adopted in genetics that refers to the presence of similar

traits in both members of a pair of twins or set of individuals.

Research indicates that, though genes play a role in multiple

sclerosis, the maximum effect is possibly only up to 30%.

In the general population, the occurrence of multiple sclerosis is

about 0.1%. This figure contrasts to its recurrence in families

among primary relatives: Parents 3%, daughters 5% and sons 1%.

The rate in the next level of relatives is aunts and uncles 2%, nieces

and nephews 2%, and first cousins 1%.

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14. Nutritional Factors and Multiple Sclerosis

Nutritional factors play an important role in controlling multiple

sclerosis:

1. You must take nutrients that will help your body to restrain the

autoimmune reactions.

2. You should not eat food that lets your body activate the immune

system against yourself and creates autoimmune reactions.

Two forms of nutrients that are believed to help suppress immune

system problems in the central nervous system are vitamin D and

omega three essential fatty acids. However, there are a shortage of

these in the environment and in many people’s diets. So, the body

of the person suffering from this disease can become deficient.

If you also suffer from multiple sclerosis, you should ask your

medical practitioner about increasing your intake of vitamin D and

omega three oils. An increased intake of these important nutrients

may help you to suppress the autoimmune reactions of your body.

According to some studies, our body needs a supply of 4000-5000

IU vitamin D each day to function well. The sun is the main source

for vitamin D and people living in the colder regions may not get

enough directly from sunlight.

Consult your doctor and check your local supermarket or drugstore.

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Always consult your own medical practitioner before changing your

diet or other habits significantly.

Some people recommend the following measures:

1. Take a supplement of 4000-5000 IU vitamin D each day.

2. Eat fish three times a week if there are no medical reasons

for caution (pregnancy, high mercury content etc)

3. Have a spoonful of flax oil each day. (omega 3)

4. Avoid dairy products and gluten grains like wheat, rye,

barley, etc.

5. Avoid legumes and yeast.

6. Substitute olive oil as a fat supply in your diet

7. Reduce your intake of red meat and saturated fat.

8. Take supplements that might improve your health.

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Part-IV: Impact of Multiple Sclerosis

15. Multiple Sclerosis and Your Emotions

Common Emotional Reactions

A person suffering from multiple sclerosis is likely to undergo some

emotional turmoil regardless of the form of multiple sclerosis. There

is a sense of disbelief, fear, anger, depression, and guilt among

almost all the people that are diagnosed with multiple sclerosis.

Fear or Apprehension: Fear is very common amongst the people

suffering from multiple sclerosis. The fear of adjustment and dealing

with their unpredictable condition through all their life makes this a

fearful disease. Besides the illness, the fear of losing control over

oneself seriously affects many.

Denial: Denial is the normal initial reaction by many people who

have multiple sclerosis. Denial can cause a person to not take

necessary action that is imperative to start dealing with this

disease.

Grieving: People with multiple sclerosis should grieve if they feel

the need to. This grieving may help them adjust to their situation

and their grieving should be accepted by family and friends.

Guilt: A feeling of not being able to carry on with daily chores

brings a sense of guilt in people with multiple sclerosis. Children

often intensify the guilt feelings of the parent. There may be no

expression of fear and anger, but the feeling is always there. So, it

should be a joint effort by every member in the family to let the

person cope with it. Feelings of guilt heighten when friends and

relatives start reacting in a bad-tempered way.

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Mood swings: People with multiple sclerosis may have severe

emotional outbursts. They may easily laugh or cry; similarly, an

unhealthy comment may bring their tears quickly. On the other

hand, a small joke may bring an uncontrolled laughter. These

reactions occur because multiple sclerosis changes the functioning

of the brain.

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16. Stress and Multiple Sclerosis

Suffering from a chronic illness like multiple sclerosis leads to

stress. Stress often has two different aspects. The first is a trigger

and the second is the response by an individual to the trigger.

The common signs of stress are alterations in breathing patterns,

tightening muscles, cold and sweaty hands and clenched teeth.

However, these signs are not the same for all people since people

react to stress in different ways.

The main signs of stress in people suffering from multiple sclerosis

are fatigue and tightness of the muscles. It is necessary to know

your usual stress responses and try to differentiate them from

symptoms of your multiple sclerosis.

Many do not believe that stress or stress control has any affect on

multiple sclerosis. They ask, “Can damage of the nerve or the

lesions increase the stress in an individual?”

Many sufferers of multiple sclerosis feel that the symptoms get

worse during a stressful time. Once the stress subsides, their

symptoms will calm down. When a person is under stress, more

energy is required to think of solutions to questions or problems and

handle day-to-day activities.

The symptoms of the disease may worsen during these times. We

have the potential to fight all odds but stress can reduce our ability

to do so.

How Can I Reduce Stress?

1. Always, keep a positive attitude.

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2. Accept the fact that some things are beyond your control.

3. Try to be assertive in handling the situation.

4. Learn different forms of relaxation.

5. Exercise every day. Exercise is essential. The more fit you

can become; the easier it is to manage the MS.

6. Maintain a balanced and healthy diet.

7. Get adequate sleep and rest. The body needs time to recover

from stressful events.

8. Do not rely on intoxicating substances like alcohol or drugs to

relieve any of your stress.

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17. Depression and Multiple Sclerosis

People with multiple sclerosis suffer from depression more than

other people. Some assume that depression is an effect of multiple

sclerosis but researchers are still not sure.

Depression is a common psychiatric problem in people with multiple

sclerosis. At least 50% of MS patients develop depression.

Depression can be handled but timely treatment is necessary.

Moreover, depression is treatable through antidepressants.

Depression in multiple sclerosis can be the result of various

things:

1. The result of the progress of the disease. Damage to the

sheath on the main areas in the central nervous system may

lead to depression.

2. The stressful and difficult life events may lead to chronic

illness as reactive depression.

3. Depression may also set in as a side-effect of certain

medicines that are used to treat multiple sclerosis.

Depression may even lead to suicide. Some studies indicate that

patients with multiple sclerosis may be more likely to attempt

suicide than patients with other mental disorders.

Some reports seem to indicate that fluoxetine may help severely

depressed patients and has a better tolerance level than some

alternative treatments. In severe cases, psychotherapy may also be

used.

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18. Multiple Sclerosis and the Self

Multiple sclerosis is a disease that attacks the central nervous

system. One of the most devastating aspects of this disease is the

cognitive impairment. This impairment and accompanying paralysis

may reduce the patients’ sense of self and make them feel

uncomfortable when they are with others.

The cognitive problems associated with this disease may also make

the patient very uncomfortable. The patient is often easily

distracted. When they get back to their original work, they forget

where they were and start again from scratch.

This is the result of failure to store the instructions in their memory.

The patient may have problems understanding instructions. They

may have speech problems or even trying to think of the right

words and the order in which to use them.

They lose their sense of visual patterns too.

All these factors add up and cause the patients a lot of difficulties

when doing their day-to-day activities. This can bring a real or

perceived social stigma of not functioning at a standard capacity.

Worrying about what others will think of them, causes the patient to

struggle with mind and motor control. Such conditions are stressful

for the patient.

The MS patient can actually start believing that the motor problems

are actually a mental problem.

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19. Multiple Sclerosis and Pregnancy

The immobilizing aspect of multiple sclerosis may give cause

difficulty in carrying the pregnancy to term. Weakness in the

muscles, coordination problems and fatigue may also lead to further

difficulties.

Paralysis and dependence on a wheelchair may encourage

complications like urinary infection during pregnancy. In addition,

the women may not feel the pelvic sensation or the pain and the

contractions during labor, making it very difficult for them to

understand the labor pain. And they may not be able to use their

muscles to push the baby during the delivery phase.

There are studies that say that women with unrecognized multiple

sclerosis start showing the symptoms during pregnancy while other

studies indicate that symptoms of MS sometimes hibernate during

pregnancy.

Pregnant women should keep a close check of the disease and

monitor the well-being of the unborn child very closely. Prenatal

checkups are essential through the pregnancy.

There is no fixed treatment for multiple sclerosis, so few

medications can be continued during pregnancy. Always consult

your physician at each stage.

Pregnant women with multiple sclerosis should avoid certain

medicines during their pregnancy and while breast-feeding. These

drugs may cause birth defects to the baby and may harm the fetus

by passing through the blood or through the breast milk. Some

medicines that you may need to avoid are prednisone,

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corticotrophin, azathioprine, cyclophosphamide, diazepam,

phenytoin, carbamazepine and baclofen.

Around 20% to 40% women with multiple sclerosis experience a

relapse in the first six months after delivery. However, there is not

enough evidence to prove that pregnancy and childbirth have an

effect on the progression of the disease. On the other hand, MS

seems to pose no particular risk to the fetus.

Keep a close watch and see a doctor regularly.

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20. Multiple Sclerosis Fatigue

Fatigue is one of the most frequent symptoms of multiple sclerosis.

Ninety percent of people with multiple sclerosis report episodes of

extreme exhaustion. The fatigue of multiple sclerosis is not just a

feeling of being tired and sleepy after labor. Fatigue can occur

anytime even without doing anything.

The fatigue of multiple sclerosis can also relate to the disease’s

effects on your muscles and bones (musculoskeletal system) .

Fatigue in multiple sclerosis comes in two forms; mental fatigue and

physical fatigue.

Mental Fatigue

Mental fatigue may be mild or severely damaging in multiple

sclerosis. It worsens after exercise or when the patient’s body

temperature increases.

Mental fatigue usually follows a daily pattern and is very different

from the fatigue associated with depression. People with multiple

sclerosis may feel fine at daybreak but feel completely exhausted by

the end of the day.

Physical Fatigue

Physical fatigue may come on to people with multiple sclerosis

through even just a short walk or any form of mild physical activity.

Their efficiency level is low but the cause for this is still not

understood. They can become completely exhausted even after just

a few steps.

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Managing Multiple Sclerosis Fatigue

You can manage your fatigue during multiple sclerosis. The more

that you know about your fatigue, the better you will be able to

manage it.

Talk to your health care provider about what you can do for fatigue:

Find out if the fatigue symptoms are due to something apart from

multiple sclerosis.

You need to get a good night’s rest. Waking up several times to use

the bathroom may keep you from getting a decent night’s rest.

Find out what is keeping you awake at night. Is it a spasm or

perhaps a bladder problem?

If your fatigue has increased over, say, the past six weeks, then

speak to your doctor about it.

Gradual exercise to build up your strength can help. You can do mild

exercises like standing or walking. There are drugs available that

may help - find out more from your doctor.

Multiple Sclerosis Fatigue and Medications

Your doctor should decide which medicine is most suitable for you.

They know the complete history of your disease and symptoms.

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