Welcome to the website of the
Southwest Virginia MS Support Group

 

 
   

 

Frequently Asked Questions

SOURCE: www.WebMD.com, www.MSAssociation.org, http://www.MSSociety.ca,

www.MSCenter.org/, ofcn.org/

(and some others which I just remember the question and I knew the answer)

 

 

 

Print these questions and answers about multiple sclerosis to discuss with your healthcare provider, family and friends.  Let your Family and friend know what you are going through.  THEY CAN HELP.  I am not a doctor but I am here for support and someone to talk to--e-mail me.  Most of the links will open in a separate browser (remember to the close link's browser after reading it or you will have a lot of browsers open and it might slow your computer down).
 

1.

What Is Multiple Sclerosis?

Multiple Sclerosis is an autoimmune diseases, whereby the body's own immune system, which normally targets and destroys substances foreign to the body such as bacteria, mistakenly attacks normal tissues. In MS, the immune system attacks the brain and spinal cord (the central nervous system) and leaves multiple scars (Multiple Sclerosis) on the myelin.

 

2.

How do I know that I have MS?

The diagnosis of MS is a clinical one, based on the individual's medical history and symptoms. A proper diagnosis requires an examination by a physician, preferably a neurologist.

 

Symptoms can vary significantly from one person to another. Examples of symptoms that are commonly reported by people with MS include problems with vision, difficulty walking, fatigue, numbness or the sensation of feeling "pins and needles." Additional common symptoms may include bowel or bladder problems, memory loss, headaches, and vertigo.

 

The occurrence of symptoms which appear briefly (lasting days or weeks) and then disappear completely or become less noticeable may be an early indication that MS is present. This pattern often corresponds to the attack and remission cycle of MS. It is important to note, however, that these symptoms can be caused by other disorders or conditions.

3.

How many people have MS?

Approximately 400,000 Americans have MS, and every week about 200 people are diagnosed. That is more than one person an hour. World-wide, MS affects about 2.5 million people. Because the Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, the numbers can only be estimated

.

4.

Why have I got MS?

Developing MS is certainly not your fault and has nothing to do with your lifestyle or behavior. You did not catch it and it is not contagious. Although we do not know why people get MS, research suggests that a combination of genetic and environmental factors may play a role.

 

Genetic factors

MS is not directly inherited and, unlike some conditions, there is no single gene that causes it. It is possible that a combination of genes make some people more susceptible to developing MS; however these genes are also common in the general population. So genes are only part of the story and other factors are also involved in MS.

 

Whilst MS can occur more than once in a family, it is more likely this will not happen. Indeed, there is only a two per cent chance of a child developing MS when a parent is affected. This risk is much lower than, for example, the risk of developing cancer or heart problems when a parent is affected.

 

 

Environmental factors

MS is more common in areas further away from the equator. It is virtually unheard of in places like Malaysia or Ecuador but relatively common in Britain, North America, Canada and Scandinavia. It is not clear why, but it is possible that something in the environment, perhaps bacteria or a virus, plays a role. No single virus has been identified as contributing to MS, but some researchers think that a common childhood virus may act as a trigger by disturbing your immune system or indirectly setting off a process whereby your immune system attacks itself. This theory remains unproven and many people who do not have MS would have also been exposed to these viruses.

 

Interestingly, it seems that if you move to countries further from the equator after the age of 15, your chances of developing MS still correspond to your country of origin, rather than the country you move to.

Maps of Geographical Prevalence of Multiple Sclerosis

 

5.

What Causes MS?

Doctors still don't understand what causes MS, but there are interesting data that suggest that genetics, a person's environment, and possibly even a virus may play a role.

 

Researchers believe that MS may be inherited (passed on from parents to children). First, second and third degree relatives of people with MS are at increased risk of developing the disease. Siblings of an affected person have a 2%-5% risk of developing MS.

 

Some scientists theorize that MS develops because a person is born with a genetic predisposition to react to some environmental agent, which, upon exposure, triggers an autoimmune response.  

In addition, some studies have suggested that many viruses such as measles, herpes, and the flu viruses may be associated with MS. To date, however, this belief has not been proven.

 

Scientific research has uncovered a number of candidates which cause MS:

 

Trauma

The role of trauma with Multiple Sclerosis is a controversial subject. It has been largely based on both anecdotal reports or information gathered based on patient memories. Controlled studies were few to none.

 

A study, published in 1991 ((Sibley, W. A., et. al., Journal of Neurology, Neurosurgery, and Psychiatry, V54, pp 584-9) and conducted at the University of Arizona, concluded that except for electrical injuries, there was no evidence of a direct relationship between traumatic injury and a Multiple Sclerosis exacerbation.

 

(Exacerbation is the term for a Multiple Sclerosis flare-up, attack or manifestation of symptoms.)

 

A second study, published in 1993 (Siva, A., et. al., Neurology, V43, pp 878-82), and conducted confirmed the Arizona study findings.

 

Although both studies found more traumatic events among Multiple Sclerosis sufferers than in healthy people, the traumas were not precipitating factors in the disease.

 

 

Genes

Multiple sclerosis is not hereditary. There is evidence, however, that having a parent or sibling (also called a first-degree relative) with Multiple Sclerosis substantially increases the probability of developing the disease.

 

Studies indicate higher prevalence of Multiple Sclerosis among certain racial groups (e.g., Northern Europeans) and almost no Multiple Sclerosis among other groups (e.g., Eskimos).

 

There are theories that Multiple Sclerosis develops within a person who is born with a genetic predisposition to the disease or with a genetic predisposition to react to some external, environmental agent.

 

 

Environment

Geography plays a role in the statistical occurrence of Multiple Sclerosis. Studies of migration patters (and a boatload of other factors) seem to indicate that people who are born in a high risk are and move to a low risk area, "acquire" the lower risk if they move before the age of 15.

 

This suggests that there may be some environmental agent and that exposure to this agent before puberty may play a factor in the development of Multiple Sclerosis.

Maps of Geographical Prevalence of Multiple Sclerosis

 

 

Viruses

We know that viruses can cause demyelination (removal of myelin from the nerves) and inflammation of the nerves. The theory is that a virus might be either the cause, or perhaps a trigger, for Multiple Sclerosis.

 

More than a dozen viruses including measles, canine distemper, and herpes (HHV-6) have been studied.

 

 

Immune System

The most commonly accepted theory about Multiple Sclerosis is that it is an auto-immune response. That is, that somehow the body's immune system, instead of fighting a foreign infection, directs the "attack" against the central nervous system (CNS).

 

The "target" of the attack (the antigen that the immune system locks onto) has not been identified.

 

Research has been able to identify:

 

which immune system cells are performing the attack,

how they are activated or sensitized to attack, and

some of the "receptors" on the attacking cells that seem to be involved.

 

Research continues on the possibility of stopping this abnormal response without interfering with normal immune cells.

 

6.

Who can tell me that I have MS?

A neurologist is the medical specialist who is trained to evaluate the symptoms of MS.

 

Ideally, it may be helpful if the neurologist is affiliated with an MS center, research facility, or a teaching hospital. The initial visit to the neurologist will include a series of questions about the medical history of the patient and his or her birth family, and a neurological exam which may include balance testing, sensory evaluation, and reflex eye movement.

 

The next step in the process of confirming a diagnosis is the MRI (magnetic resonance imaging) of the brain. Repeat MRI scans may show contrast and permit the neurologist to estimate the evolution of lesions (inflamed areas). Other tests to support the physicians' diagnosis are evoked potentials (visual and somatosensory) and analysis of spinal fluid (the cerebrospinal fluid (CSF)).

 

Please note that lesions can occur throughout the disease process even though there are no apparent symptoms present.

7.

Who gets MS?

Most people with MS experience their first symptoms and are diagnosed between the ages of 15 and 50.

 

The distribution of the disease is not totally random. On average, women are three times as likely than men to develop MS. Additionally, the occurrence of this disorder is positively correlated with latitude. People living beyond the 40-degree mark north or south of the equator are far more likely to develop MS than those living in the warmer climates near the equator. This is especially true for people in North America, Europe, and southern Australia, while Asia continues to have a low incidence of MS. More prevalent among those of northern European or Scandinavian ancestry, Caucasians are far more likely than those of African heritage to develop this disease.

8.

What will it do to me? What is my prognosis?

Impossible to predict. At best you may suffer minor symptoms which may or may not increase in severity over a number of years. At worst you may become very disabled and end up confined to a wheelchair, or in extreme cases you may be completely bed-bound and wholly reliant on care.

9.

Can I inherit MS?

Although the cause of MS is not completely understood, researchers believe there may be some genetic link. The average risk of developing MS in the United States is one in 1,000, or one tenth of one percent. For first-degree relatives (such as a child or sibling), the risk increases to three or four percent. This is not true for adopted children or half siblings (who do not share the same parent who has MS), whose risk is the same as unrelated individuals. In instances where one identical twin has been diagnosed with MS, the other twin has a 31 percent risk of developing the disease. The risk for twins who are not identical is five percent – similar to that of other siblings.

10.

What Are the Symptoms of MS?

The onset of MS may be dramatic or so mild that a person doesn't even notice any symptoms.

 

The most common early symptoms of MS include:

 

Tingling

 

 

Numbness

 

 

Loss of Balance

 

 

Weakness in one or more limbs

 

 

Blurred or double vision

 

Less common symptoms may include:

 

Speech Disorders

 

 

Sudden onset of paralysis

 

 

Lack of balance & coordination

 

 

Problems with thinking and processing information

 

 

As the disease progresses, other symptoms may include heat sensitivity, fatigue, changes in thinking or perception, and sexual disturbances.

 

11.

What causes the symptoms?

MS symptoms result when an immune-system attack affects myelin, the protective insulation surrounding nerve fibers of the central nervous system (the brain and spinal cord). Myelin is destroyed and replaced by scars of hardened "sclerotic" tissue. Some underlying nerve fibers are permanently severed. The damage appears in multiple places within the central nervous system.

 

12.

 

Does MS change over time?

Most people are diagnosed with relapsing remitting multiple sclerosis (RRMS). Over time, some people in this category develop secondary progressive multiple sclerosis (SPMS) to have Benign MS.

13.

Is Multiple Sclerosis Fatal, Contagious, or Hereditary?

MS is not considered a fatal, contagious or directly inherited disease, although there may be a familial predisposition of MS. Prevalence in families of individuals with MS is somewhat higher than in the general population.

 

14.

Is There a Cure for MS?

Unfortunately, there is not a cure for multiple sclerosis, but there are now FDA-approved medications that have been shown to "modify" or slow down the underlying course of MS. There are also many treatments available that can help a person with MS manage their symptoms and live a productive and fulfilling life.

 

Here is a list of medications used in MS from the National MS Society's website.

 

15.

Why is MS so difficult to diagnose?

In early MS, symptoms that might indicate any number of possible disorders come and go. Some people have symptoms that are very difficult for physicians to interpret, and these people must "wait and see." While no single laboratory test is yet available to prove or rule out MS, magnetic resonance imaging (MRI) is a great help in reaching a definitive diagnosis.

16.

What medications and treatments are available?

The National Multiple Sclerosis Society recommends that a person consider treatment with one of the FDA-approved "disease-modifying" drugs as soon as possible following a definite diagnosis of MS with active or relapsing disease. These drugs help to lessen the frequency and severity of MS attacks, reduce the accumulation of lesions (areas of damage) in the brain, and may slow the progression of disability.

 

In addition to drugs that address the basic disease, there are many therapies for MS symptoms such as spasticity, pain, bladder problems, fatigue, sexual dysfunction, weakness, and cognitive function problems. People should consult a knowledgeable physician to develop a comprehensive approach to managing their MS.

 

17.

Is MS contagious?

No, MS is not contagious, nor is it directly inherited although research studies now underway are suggesting that genetic factors make certain people more susceptible to developing MS.

18.

Is there hope for a cure?

Absolutely. Researchers are learning more about what causes MS everyday and zeroing in on ways to prevent it. Research funded by the MS Society of Canada funded and its related MS Scientific Research Foundation is targeting these areas:

 

Repair damaged myelin and nerve fibers — Since the central problem in MS is the destruction of myelin, a crucial focus is to find a way to stop the damage and stimulate myelin regrowth Another important research area is the repair injured nerve fibers.

 

 

Immune system — The immune system attacks the body’s myelin so it is vital to understand what triggers that attack and to find ways to block it. The current MS therapies have been developed from immune system research efforts.

 

 

Viruses may trigger MS attacks. Work is underway to identify them.

 

 

Genetics — Significant progress is being made in understanding how genes may contribute to the development of MS. The world’s largest study of genetic susceptibility is taking place in Canada.

 

 

MRI studies — Since the 1980s, magnetic resonance imaging (MRI) has been used to allow investigators to see into the living brain and to detect MS lesions. MRI allows for faster diagnosis of MS and, equally important, faster evaluation of potentially useful MS therapies. Canadian scientists are leaders in this field.

 

 

Health research - This program funds research that seeks to find the overall determinants of health and that helps people with MS to better cope with the disease. Areas funded include: epidemiology, health economics and psycho-social and behavioral issues.

 

 

 

19.

Does MS always cause paralysis?

No. Moreover, the majority of people with MS do not become severely disabled. Two-thirds of people who have MS remain able to walk, though many will need an aid, such as a cane or crutches, and some will use a scooter or wheelchair because of fatigue, weakness, balance problems, or to assist with conserving energy.

20.

Am I Going to End Up in a Wheelchair?

Most people with MS usually get around without assistance; however, there may be a time when you will need some type of assistance. Approximately 25% of people with MS will need a wheelchair. There may be a time when you would need to use some type of other walking aide like a cane or walker.

21.

How Do I Decide Which Therapy Is Best for Me?

Choosing to begin therapy can be a difficult decision to make; learning about your treatment options and discussing them with your doctor is the first step in deciding what treatment to begin.

 

Some other factors to consider are effectiveness, side effects, your current lifestyle, and how the therapy is given.

 

22.

How Do People With MS Benefit From Deep Brain Stimulation?

The main purpose of deep brain stimulation in those with MS is to control tremor. In the case of multiple sclerosis, other problems such as loss of vision, sensation, or strength are not helped by deep brain stimulation.

 

23.

What Alternative Therapies Are Recommended for MS?

Positive Attitude. Having a positive outlook cannot cure MS, but it can lower your stress and help you feel better.

 

Exercises, such as tai chi and yoga can lower your stress, increase relaxation, and increase your energy, balance, and flexibility. As with any exercise program, check with your doctor before getting started.

 

24.

What Is Optic Neuritis?

Optic neuritis is the inflammation of the optic nerve, the nerve located in the back of the eye that transmits light and visual images to the brain and is responsible for vision. According to the National Multiple Sclerosis Society, 55% of people with MS will have an episode of optic neuritis. Frequently, it's the first symptom of the disease. Although having optic neuritis is very suggestive of MS, it does not mean that a person has or will get MS.

 

The symptoms of optic neuritis are the acute onset of any of the following:

 

Pain in the eye

 

 

Blurred vision

 

 

Graying of vision

 

 

Blindness in one eye

 

It's rare that both eyes are affected simultaneously. Loss of vision tends to worsen over the course of a few days before getting better. This usually takes about 4-12 weeks. Treatment may include intravenous and/or oral steroids to control the inflammation.

 

There are other visual symptoms with MS.

 

25.

What is an MS exacerbation/flare up?

An MS exacerbation or flare up is defined as new or returning neurological symptoms that last for more than 24 hours and are not caused by other causes such as infection. MS exacerbations are caused by new areas of demyelination within the central nervous system.

 

26.

What do I do if I am having an MS exacerbation?

If you are having an exacerbation we suggest that you make an appointment to be seen by your doctor. It is important to be seen to help us identify if this is a true exacerbation or if there is another cause. Some, but not all exacerbations are treated with steroids. Steroids have a number of possible side effects, some of which are serious. The more often a person uses steroids their risk of developing other health problems such as osteoporosis, cataracts, etc. increases.

 

27.

Why do my symptoms get worse when I am sick or when I get hot?

Nerves do not like being hot! When they get hot, they don’t send information as well, so you may find that your symptoms worsen or old symptoms reappear. Your symptoms should go back to your baseline after you have cooled off.

 

28.

What can I do to help keep cool during the summer months and during exercise?

Drinking cold water before, during and after exercise as well as on warm days can help to cool you from the inside out. Spraying yourself with cool water or wearing a cooling vest can also be helpful. You may want to try taking a cool shower or bath for 30 minutes prior to doing activities in the heat. This can help to keep you cool for up to 4 hours. Try and avoid exercising during the hottest part of the day. Outdoor activities should be done in the early morning or early evening.

 

29.

What do I do if I need a copy of my medical records?

Send a letter to your doctors office in writing stating where you want your medical records sent and please sign and date it. There might be a charge to send the records directly to you, but there is probably no charge to send records to another health care provider’s office.

 

30.

Can I get a flu shot?

MS is not a contraindication to any vaccination.

 

31.

I feel fine now, why should I start an injectable medication now?

Studies have shown the earlier a patient starts an injectable medication the less disability they will have from MS in the long run.

 

32.

Will  Avonex®, Betaseron®, Copaxone®, Novantrone®, Rebif®, or Tysabri® make any of the symptoms better that I have now?

All of the injectable medications are meant to prevent new lesions from forming, prevent exacerbations and prevent long term disability. They will NOT improve any symptoms that you have now.

 

33.

I need a letter written  on my behalf because of MS which is  endorsed by my doctor, what should I do?

Write an outline of the letter you need sent, including to whom, address, fax number, etc. List the details you need discussed and why you need the letter. Make sure you sign the request as the doctor can't release information about you without your written permission. Some doctors may require you to sign one of their own release forms. Check with their office to make sure you give them all the information they need.

 

34.

What do I do if I need to travel on an airplane with my injectable medication?

Contact the airline to find out what they require but all you need to do is carry the packaging including the label from the pharmacy that includes your name and the prescriber’s name. If your airline requires something else, please notify your doctor's office. You may also like to have an MS ID card. You can download an application at www.mscenter.org.

 

35.

What do I do if I can’t afford my medications?

For the injectable medications always try calling your drug's support line. NORD also offers some assistance programs. Go to www.rarediseases.org . Another source is www.needymeds.com. This website offers discounted medication programs for patients who qualify. Also check the prescription help page on this website.

 

36.

Why do doctors feel that I am imagining my symptoms?

In the beginning phases of multiple sclerosis, diagnostic tests, such as MRIs, may be negative due to subjective sensory symptoms. These symptoms can include tingling, numbness, or fatigue, and will not be seen on diagnostic tests. This leads doctors to believe there is no illness or that anxiety is present.

 

You should also know that a clinical diagnosis of MS may take years. Often a physician observes a person over a period of time before reaching a diagnosis of MS. Neurologists are generally consulted and diagnostic tests such as MRIs, evoked response potential, and others may be used to help with a diagnosis.

 

If you are not sure you have MS, don't be afraid to ask questions and to find out more about feelings and symptoms. Do not let symptoms continue without further investigation.

 

37.

Is memory loss related to multiple sclerosis?

Memory problems are fairly common among people with MS. Memory and reasoning problems may affect between two thirds and three fourths of those diagnosed with MS to varying degrees. However, one should consider other issues that may lead to memory problems such as depression, other illnesses, and normal absent-mindedness. If memory loss is a constant problem, there are certain "mnemonic" exercises that may help or, consult a physician. Some treatments may be available to enhance cognitive functioning.

 

38.

Is depression related to multiple sclerosis?

As in most cases with the onset of an illness, depression is a frequent reaction. MS-related lethargy and fatigue may also be mistaken with depression or heighten its effects. Fortunately, medical and alternative treatment options are available to help people cope with difficult feelings. And counseling services are often very accessible. The MS Foundation is available to provide further referrals and information.

 

39.

What can you do for numbness?

Numbness is a bothersome problem, but may be managed with certain action. Exercise and a healthy diet may help those with MS alleviate symptoms of intermittent numbness. Numbness also depends upon its cause. If severe neurological damage to the myelin sheath takes place, then numbness may remain. Check with your doctor for prescription medications. Look at the Medications Used in MS for meds for numbness and any other problems (you can look at them by Name Brand, Chemical Name or by Usage).

 

Non-drug options to address numbness include body cooling, acupuncture, or pointed pressure therapy. Weighting, the addition of weights to areas of the body, may also help anchor some movements.

 

40.

Does diet affect multiple sclerosis?

What we eat has a direct relationship on how we feel and function. Nutrition is a process of fueling our bodies and those with MS may have unique nutritional needs. Because MS is rarely found in areas near the Equator, or in Asian population, some theorize that their lower-fat dietary habits may be the reason for this. Many diets have, in fact, been suggested for the treatment of MS including diets free of allergens, gluten, or fat, and others. To date, the most accepted diet for those with MS is one low in fat. Smart choices and knowledge of nutrition can help most anyone feel better and more in shape.

 

41..

Is it safe to get pregnant?

You certainly can have a baby. Multiple sclerosis does not affect your fertility. Your pregnancy will progress normally, and MS symptoms usually stabilize or improve during pregnancy. If your muscles are weakened, you may not be able to push sufficiently during delivery, and you may need help from instruments or suction. Between 20 and 40 percent of women have a relapse following delivery, so you may need to plan for more rest and assistance during the first few months. Your long-term chance of a relapse is not affected by pregnancy.

 

You should not take interferons or steroids during pregnancy or while breast-feeding. Interferons increase the possibility of miscarriage and are transmitted in breast milk. Steroids can be passed to the fetus through blood and breast milk. The effect of Copaxone is not known, but it is generally advised to avoid it as well. You will probably want to discuss with your neurologist stopping your medications two to three months before attempting to become pregnant. You should also discuss any other medications you are taking at that time.

 

Whether or not to have a baby is an important decision for any person or couple. You will be responsible not only for a baby, but for this child as he or she grows and changes over the years. You will need to consider how a child will change your relationship with your partner; and how a child, coupled with the fatigue and other symptoms possible with MS, will impact on your life together. At times, you may need outside help. Many women, with or without a disability, must learn to ask for help instead of trying to do everything themselves. There may even be periods during which you will be physically unable to care for your child, and you will need to have someone identified who is able to step in. You and your partner, together with your doctor, should have some thorough discussions before making this commitment