Frequently Asked Questions

What are Multiple Sclerosis and Demyelinating Diseases?

Diseases of the nervous system are called different names depending on which tissues of the nervous system are affected and what nature of injury occurs. When inflammation occurs for no clear reason within the brain, optic nerves, or spinal cord, the term “demyelinating disease” is used. Demyelinating refers to the affecting of the white matter of the brain. This tissue contains the connections between parts of the brain and spinal cord. Examples of these illnesses named after certain parts of the nervous system include optic neuritis, which involves the nerves to the eyes, and transverse myelitis, which involves the spinal cord in varying degrees. When these illnesses recur or continuously worsen over time, or affect additional regions of the nervous system, they are called multiple sclerosis. Sclerosis simply means a scar in the brain from the injury. 

In these illnesses, immune cells enter the brain because they perceive an abnormality. This abnormality may false, may be a mistake, or it can be due to the presence of an unknown microbe in small degrees. Regardless, the immune cells cause substantial injury on entry into the brain tissue, resulting in local disruption of function, which may be experienced as various problems.

Multiple sclerosis often means a different experience for every individual who has it. It is usually a disabling disease, even when it starts as a mild illness. This illness does not usually cause someone to die.

 

What are the Symptoms of MS and Demyelinating Diseases?

Symptoms of any disease in the nervous system usually depend on which portion of the nervous system is involved. For example, a problem near the part of the brain involved with sensing movement will be felt as abnormal movement sensation or vertigo. A problem in the pathway carrying vision impulses will produce blurred vision. Trouble in the large bundle of nervous tissue in the neck (the spinal cord) will produce difficulties with sensation difficulties or trouble with the arms, legs, bladder, bowels, or sexual function. Some parts of the brain can be affected and cause few obvious symptoms. For example, the deep white matter of the brain can be affected and produce difficulty with concentration, finding words, or fatigue. Because people with MS have the disease for many years, they often experience similar symptoms as time goes by.

The most common symptom in MS is fatigue, usually excessive sleepiness and difficulty with concentration and energy in the middle and later parts of the day. After that sensation changes, as innocuous as tingling, shooting pains into the limbs, or as serious as constant pain in the head, trunk, or limbs which is difficult to relieve. Trouble with vision, such as blurred or double vision, which cannot be corrected with glasses. Difficulty walking, either to balance problems or leg weakness. Poor coordination or tremor of the hands. Vertigo, or an abnormal sensation of movement. These symptoms may come and go or persist depending on the individual. With time, these problems tend to be continuous. Many symptoms of MS worsen as the body temperature elevates from bathing, exercise, or even normal body temperature rises in the afternoon. Severe muscle stiffness or overactive reflexes may occur when the temperature is cooler.

Terms used to describe the course of MS refers to how the symptoms occur. “Relapsing” MS refers to individuals who experience well defined episodes of worsening symptoms, which may or may not completely resolve. Most people with MS begin with this pattern of illness. “Progressive” MS refers to worsening which is difficult to perceive, but noted usually over many months or years. This is not necessarily worse than the relapsing course, but it is more difficult to improve. After ten years of symptoms most MS will be classified as progressive. Generally, the older someone is, or if they are males, the less dramatic relapses.

 

How do You Manage Relapses in MS?

Relapses will occur to 90% of people with MS at some point. A relapse is usually defined as symptoms which are worsening over at least 24 hours, presumed to be due to MS, and not due to an infection which is causing a fever. Not all relapses require treatment. The first question is to ask whether one has such an infection prior to considering treatment of a relapse. If a bladder infection is suspected because of an increase in urgency to void, burning on urination, or odor of urine, this must be addressed by an appropriate physician. Milder relapses, such as tingling numbness, mild visual disturbances which do not disrupt reading or driving, or mild vertigo do not usually require treatment and will resolve often spontaneously. Relapses which will usually need treatment are those with significant bowel or bladder dysfunction, major difficulty with walking or balance, or vision loss. Sensation abnormalities which are very painful or involve difficulty using a limb may also benefit. 

The usual treatments for relapses, often called exacerbations, of these illness requires very high doses of corticosteroids for a few days. These medications are not muscle-building steroids, but instead have a role in calming down the immune system. Small doses may be worse than no treatment at all, and the large doses are needed to get into the brain to interrupt the cycle of immune injury and get inflammatory cells out of the brain. Such treatments have been found to be very safe and rarely associated with any long term side effects.

Traditionally, these steroid treatments were administered by intravenous infusions. More recently, trials have demonstrated to be equally effective in large quantities given by mouth; however, most physicians are unfamiliar with this treatment, and it is usually prescribed only by specialized neurologists. While the action of the treatment is immediate, improvement usually continues for many weeks. These treatments work better the more recently the relapse has occurred. A physician will usually want to establish that you have a significant relapse and prescribe the appropriate treatment.

Other treatments are occasionally used in life-threatening or severe relapses unresponsive to treatment.

 

What are the Medications That Modify the Course of MS?

Currently, 5 injectable medications are approved in the US as being safe and effective for MS to reduce relapses and risk of progressive disability. Several pill therapies are also sometimes used. Three injections are different forms of interferon-beta, a hormone used by the body to defend against viruses. One injection is an artificial protein which alters the immune response, much like an allergy shot. The other medications are stronger medications to diminish the action of the immune cells.

Weekly low dose interferon or Avonex protects against more severe relapses and reduces time to the next relapse, especially early in the course of the disease prior to an established course of MS. Betaseron and Rebif, both multiple doses weekly of interferon, have better effect in established MS and in those with a progressive as well as relapsing component to illness. Interferons have similar side effects which resemble the symptoms of a virus. Usually these adverse symptoms diminish with each injection, cause no harm, and can mostly prevented by analgesics such as acetaminophen, ibuprofen, and naproxen. Although these medications are very safe, occasional individuals have stress on their blood or liver, requiring blood tests to monitor for this problem. Individuals usually administer these injections on their own, often with an automatic injector, although some may receive the weekly interferon in the doctor’s office. 

Copaxone, a noninterferon the allergy shot therapy, is an alternative medication to the interferons but takes 6-12 months to reach its greatest effectiveness. It has benefits on relapses and some improvement on MRI activity. Generally, the effect on MRI is not as great as that with interferons. It is however extremely safe and has virtually no side effects other than at sites of injection.

Powerful immunosuppressive medications are used for more difficult courses of MS. These include Novantrone, an approved chemotherapy agent. This drug is well tolerated but increases risks of infection, but more reliably produces improvement than any other treatment. Azathioprine and methotrexate are immunosuppressive medications available as pills, but have been used successfully alone and in combination with other therapies to improve the course of MS. These medications are rarely used as first choices in therapy due to the increased risk associated with them, and careful consideration is warranted with counseling from the physician.

 

What are the Treatment of Symptoms in MS?

It is important to emphasize that symptoms of MS are best treated first by finding a therapy which reduces new injuries to the nervous system. However, many treatments are available to help diminish individual symptoms arising from MS. Fatigue, the most common symptom, is often difficult and requires many attempts at treatment. First, the quality of night time sleep is examined. If one does not awake feeling rested, usually the night time sleep is disturbed. Trouble getting to sleep is often helped by a sleep aid, while trouble staying asleep in the middle or latter part of the night usually responds to antidepressant medications. Individuals who snore, or have leg movements frequently, may have very disturbed sleep efficiency resulting in poorly restful sleep.

The most common fatigue in MS is excessive mid or later day fatigue. This may respond to stimulant therapies. An older stimulant, amantadine, or a newer nonnarcotic stimulant called Provigil, are proven therapies in MS. Stronger stimulants of the amphetamine family are sometimes used but require much closer supervision.

Painful sensations are common, and may respond to a variety of medications, including certain antidepressant medications such as venlafaxine or nortriptyline, anti-seizure medications such as gabapentin or carbamazepine, and nonnarcotic pain killers such as tramadol. Rarely high dose narcotic medication may be helpful, but this usually must be conducted under close supervision.

Vertigo sensations often respond to small doses of medication in the Valium family, and also to medication to deal with the nausea or motion sickness which may result. Vertigo also can be effectively treated by exercises.

Bladder dysfunction is of multiple types and can be difficult to diagnose or treat. Failure the empty to bladder, or continually keeping large amounts of urine can lead to infection and kidney injury. This may respond to medication to relax the valve on the bladder, but is also treated by self catheterization, a simple procedure of inserting a tube in the bladder to achieve effective drainage. A more common problem is urinary urgency or overactive bladder, in which the reflex to empty the bladder is overactive and not entirely under voluntary control. Antispasmodic medication for the bladder can reduce this, but can lead to difficulty emptying in some cases. Loss of urine involuntarily, or urinary incontinence, can occur for either because of failing to empty or from overactive reflexes, and in addition in women can be due to a weak pelvic floor from prior surgery or childbirth. 

Depressed mood a common occurrence in MS and presumably occurs because of damage to nerve cells which make chemicals to produce normal mood. These symptoms include changes in drive, loss of pleasure, changes in appetite, irritability, changes in sleep, and a sense of guilt, hopelessness, or desire to die. It is usually effectively treated and kept away by antidepressant medication. Depression is sometimes worsened by interferon treatment, but usually does not require stopping medication.

Sexual dysfunction can occur in MS for many reasons, too extensive to go into in a brief discussion. Many of these problems are treatable.

Spasticity refers to overactive reflexes causing stiffness or involuntary movements. This occurs when loss of voluntary control over a limb is a problem. A leg may stiffen or jerk, move slowly, or tremor uncontrollably as the reflexes fight each other. Pills are available which dampen these reflexes, and injections and surgery are available for controlling this problem when severe.

Tremor can occur in some individuals, often in the head or hands. Medication can diminish this, or in rare cases brain surgery.

Trouble with walking or balance may require aids and special training to use them to assist one in doing daily activities.

 

Why do people get MS?

The best simple answer is “bad luck.” A more complete explanation is that why an individual develops MS is due to a combination of factors which elevated risk. In the US, about 1 in 250 people will develop MS. Most of the risk of getting MS has to do with ancestry. Having a close relative with MS elevates the risk 50 times. However, only 2-5% of children of affected parents will be diagnosed with MS. People of Northern European descent, and those who grow up farther from the equator, are more at risk. However, any person can get MS. The risk to African Americans is about ½ of that of Caucasians in the US. Despite this, most people with MS do not have an affected family member. Some families break these rules and have many affected members, but the usual situation is that MS is less of a genetic illness than diabetes, heart disease, Parkinson’s disease, or Alzheimer’s disease.

MS in some respects appears to be a consequence of an infectious disease. Numerous investigations have failed to yield a consistent relationship with a single infectious agent. However, everyone with MS has a virus known as EB. EB is a very common virus which affects almost 90% of people, and infects their immune system in a lifelong fashion. It causes mononucleosis, also known as mono. 

Most specialists who treat MS believe it occurs uncommonly at random following an infection with a common virus, leading to a disorder of the immune response which injuries the brain unnecessarily. 

 

What are the Tests for Multiple Sclerosis?

In most individuals with MS, their diagnosis is established over time and the consideration of alternative causes for their symptoms. One astonishing fact about MS, is that once an individual has a typical problem associated with MS, the risk of having MS within 15 years is 90% even if all other tests show negative findings. The gold standard of diagnosis is seeing multiple problems in the nervous system come and go without another explanation.

The most useful tests for multiple sclerosis are MR imaging of the brain and sometimes spinal cord, cerebrospinal fluid examination for abnormal immune proteins, and electrical testing such as evoked responses. Other testing is often used to exclude other potential causes of the symptoms. These tests are minimally invasive and may be repeated after a period of time (usually years) if the diagnosis is inconclusive.

 

What is Multiple Sclerosis?

Multiple Sclerosis, or MS, is an autoimmune disease of the central nervous system in which the protective covering around nerves is destroyed, disrupting the communication between the brain and nerve pathways.

 

What causes MS?

The cause of MS is still unknown, although there is a lot of speculation and research. MS could be the result of a common virus. Genetics may also be a factor, although MS is not directly inherited.

 

Is MS fatal?

No, MS does not have a significant impact on life expectancy.

 

How do I know if I have MS?

To be sure you have MS, you need a clinical diagnosis from a neurologist. The diagnosis is made based on medical history, symptoms, as well as the results of tests such as MRIs.

 

Who can get MS?

MS is usually diagnosed between the ages of 20 and 40. Although anyone can get it, some people are more susceptible than others. Women are 2-3 times more likely to develop MS than men. Additionally, caucasions and those who live in high latitudes are more likely to develop MS. 

 

Is it safe to get pregnant if I have MS?

MS does not affect fertility, and it is safe to get pregnant, but you should not take interferons or steroids during pregnancy or nursing. Consult your doctor before trying to get pregnant, as you will likely need to stop taking your medication 2-3 months beforehand. Also note that some women have a relapse following delivery.

 

What are common symptoms of MS?

Symptoms of MS are unpredictable, as they vary by individual. Some symptoms may include problems with extreme fatigue, blurred or double visio, loss of balance or coordination, muscle stiffness, bladder/bowel, short term memory, and tingling or numbness.

 

Is there a cure for MS?

There is currently no cure for MS, but there are treatments to manage it. See the treatment options link for more information.

 

Why is MS difficult to diagnose?

Symptoms may be sporadic and common of many other disorders. There is no single lab test yet that can prove or disprove a case of MS, although MRIs have been very helpful in diagnosis.

 

Online Resources

For those newly diagnosed with MS, The Consortium of Multiple Sclerosis Centers offers the Essential Elements Tool Kit. To order your free kit, please visit www.mspatientcare.org.

For extensive information about medical conditions, medications, procedures and tests in the field of neurology, visit the Advanced Neurosciences Institute Medical Library: http://ani.fromyourdoctor.com

MS Organization Websites

www.msmidsouth.org – Mid South Chapter of National Multiple Sclerosis Society

www.nmss.org – National Multiple Sclerosis Society

www.mscare.com – Consortium of Multiple Sclerosis Centers

www.iomsn.org – International Organization of Multiple Sclerosis Nurses

www.msaa.com – Multiple Sclerosis Association of America

www.mssociety.ca – Multiple Sclerosis Society of Canada

www.mscrossroads.org – MS Crossroads

www.msif.org – Multiple Sclerosis International Federation

www.msawareness.org – MS Awareness Foundation

www.msworld.org – MSWorld, Inc.

www.heuga.org – The Heuga Center

www.centerwatch.com/drug-information/fda-approvals – CenterWatch FDA Drug Approvals

www.medmatrix.org – Medical Matrix

 

MS Websites

Medications

Overview of the injectable medications, and several pills, currently available in the U.S. for treatment of MS.

Avonex FDA- approved

  • weekly low dose interferon
    for relapsing-remitting MS
  • protects against severe relapses
  • intramuscular injection once a week
  • side effects: flu like symptoms, depression and liver dysfuntion less common
  • approved in 1996

 

Betaseron and Extavia (interferon-beta-1b) FDA-approved

  • subcutaneous (under skin) injection every other day
  • interferon
  • for relapsing-remitting, first symptom, and progressive-relapsing MS
  • reduces relapse rate
  • side effects: flu like symptoms, injection site reactions
  • can cause depression
  • approved in 1993

Rebif (interferon-beta-1a) FDA-approved

  • subcutaneous injection three times a week
  • interferon
  • for relapsing-remitting MS
  • reduces relapse rate
  • side effects: flu like symptoms
  • approved in 2002

Copaxone (glatiramer acetate) - FDA approved

  • daily subcutaneous injection
  • noninterferon, probably safest medication for MS
  • skin redness, itching, and dimpling common
  • for relapsing-remitting MS and first symptom MS
  • reduces relapse rate
  • improvement on MRI activity
  • takes 6-12 months to be most effective
  • extremely safe
  • side effects: injection site reactions such as swelling, redness, pain
  • approved in 1996

Novantrone (mitoxantrone) FDA- approved for MS

  • powerful immunosuppressive medication – rarely used
  • chemotherapy agent
  • for secondary prgoressive, progressive relapsing, and some types of relapsing-remitting MS
  • reduces relapses and lengthens time between relapses
  • IV infusion once every three months
  • side effects: risk of heart muscle injury (5%) and leukemia (1%)
  • nausea, hair loss, menstrual disorders (permanent menopause)
  • improvement compared to other treatments
  • approved in 2000

Tysabri (natalizumab) approved for MS

  • antibody that makes it difficult for immune system cells to move into the brain and spinal cord
  • for relapsing remitting MS that has not responded to other treatment
  • reduces relapse rate
  • IV infusion once every four weeks
  • 1/3 of patients improve in disability, suppresses 90% of MRI disease
  • increases risk (1:1000) of viral infection of the brain
  • infrequent side effects: headache, pain, fatigue, diarrhea, depression
  • approved in 2006

Azathioprine (Imuran), leflunomide (Arava), and Methotrexate - not approved for MS

  • immunosuppressive medications in pill form
  • rarely used as therapy at first due to their increased risk

Gelinya (fingolimod) FDA approved

  • mild immunosuppressive/immunomodulatory medication in pill form
  • good safety profile, but some risks require consideration and monitoring
  • first dose usually give in doctors office
  • 1:200 risk of eye (macula) swelling
  • 1:200 risk of symptoms with slow heart rate on first dose
  • Need to have had chickenpox or vaccine at least 30 days before
  • Monitor for liver stress
  • Need bullet-proof reliable contraceptive

Alemtuzumab (CAMPATH) not yet approved for MS

  • immunosuppressive medication – powerful
  • rarely used as therapy at first due to their increased risk
  • risk of automimmune complications
  • bleeding (ITP) in 2-3 %
  • thyroid dysfunction in about 20%
  • appears more powerful than interferon-beta

Rituximab (Rituxan)

  • immunosuppressive iv medication
  • usually used as rescue therapy in very severe MS
  • rarely used as therapy at first due to increased risk
  • risk of serious infections

Procedures

Ocular coherence tomography (OCT) scanning of optic nerve head painlessly and rapidly quantitatively measures for the existence of prior injuries to the optic nerve. The presence of these defects is very common in MS and supports the presence of disease prior to established disability.

Quantitative somatosensory testing to determine thresholds for thermal and vibration sensitivity. This testing can demonstrate slight degrees of numbness which are not detectable by normal examination.

Color vision defects can be detected by a computer driven color blind testing system. Such minor changes are indicators of optic nerve disease which is seen in MS.

Multimodality evoked potentials use multiple visual stimuli (color, movement) rather than a single (black and white) stimulus to measure visual responses. Somatosensory evoked potentials performed by highly trained technicians are helpful for demonstrating how much injury is present in the central nervous system.

Motor evoked responses permit accurate measurement of conduction velocity in the central nervous system.  Differences between two sides indicate a typical injury such as is seen in multiple sclerosis.

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