Primary progressive MS
Related Terms
Autoimmune disease, autonomic failure, basal ganglia, bowel dysfunction, cerebrospinal fluid, Chlamydia pneumoniae, clonus, cognitive impairment, complete blood count (CBC), computed tomography, corticosteroids, creatine kinase, CSF, CT, demyelination, depression, diplopia, dysarthria, dysphagia, EEG, electroencephalogram, electromyogram, EMG, Epstein-barr virus, evoked potentials, exacerbation, food allergies, herpesvirus type 6, immunity, incontinence, interferon, irritable bladder, Lhermitte's sign, lumbar puncture, magnetic resonance imaging, mercury, MRI, MS, myasthenia gravis, Mycoplasma pneumoniae,myelin, nocturia, nystagmus, oligodendrocytes, osteoporosis, paraparesis, peroneal nerve, PET, plasmapheresis, positron emission tomography, primary progressive MS, quadraparesis, relapsing-progressive MS, relapsing-remitting MS, remission, sclerosis, secondary progressive MS, sexual dysfunction, spasticity, spinal tap, systemic sclerosis, trigeminal.
Background
Multiple sclerosis (MS) is a chronic (long-term), progressive, degenerative disorder that affects nerve fibers in the brain and spinal cord. Multiple sclerosis is widely believed to be an autoimmune disease, a condition in which the immune system attacks components of the body as if they are foreign.
A fatty substance, called myelin, surrounds and insulates nerve fibers and facilitates the conduction of nerve impulse transmissions. MS is characterized by damage to myelin (called demyelination) caused by the destruction of specialized cells (oligodendrocytes) that form the myelin. Demyelination causes scarring and hardening (sclerosis) of nerve fibers usually in the spinal cord, brain stem, and optic nerves, which slows nerve impulses and results in weakness, numbness, pain, and vision loss.
Because different nerves are affected at different times, MS symptoms often worsen, improve, and develop in different areas of the body. Early symptoms of the disorder may include vision changes, such as blurred vision or blind spots, and muscle weakness.
MS can progress steadily or cause acute attacks (exacerbations) followed by partial or complete reduction in symptoms (remission). Most individuals with the disease have a normal lifespan.
MS affects over 250,000-500,000 people in the United States and may affect 2.5 million people worldwide. Northern Europe and the northern United States have the highest prevalence, with more than 30 cases per 100,000 people. Multiple sclerosis affects two to three times as many women as men, and affects Caucasians more often. Most individuals experience their first signs or symptoms between ages 20 and 40. Children of parents with MS have a higher rate of incidence (30-50%). Heredity does play a role in the development of MS.
Multiple sclerosis is unpredictable and varies in severity. In some individuals, multiple sclerosis is a mild illness, but it can lead to permanent disability in others. Treatments can modify the course of the disease and relieve symptoms.
Risk factors and causes
The causes of multiple sclerosis are when myelin (the protective coating around nerves) is attacked by the individual's immune system and inflammation results, causing problems in nerve transmission. When myelin is lost or damaged, the transfer of nerve impulses to and from the brain is disrupted and nerve tissue can become inflamed. The inflammation is what causes multiple sclerosis symptoms to appear.
Inflammation also occurs with a relapse. During a relapse, an individual with MS may experience some physical disability and/or cognitive impairment, such as trouble with memory or problem solving. When the inflammation subsides, the symptoms of multiple sclerosis may subside as well. This period is known as a remission. Physical disability is one way to mark the progression of disease in multiple sclerosis. However MS can also progress silently through the loss of axons. The brain can compensate for some level of damage, so symptoms may be hidden for quite some time. Individuals actually could have multiple sclerosis, yet still feel perfectly healthy.
Heredity: Studies examining the incidence of the disease in the general population, in families, and in twins support a genetic component to MS. However, no single gene has been identified that determines susceptibility to the disease; rather, a number of genes are believed to be involved. About one quarter of all people who have MS have a relative who is also afflicted with the disease. Studies of identical twins show that MS occurs in both twins in about 25-35% of cases. This finding suggests that up to 75% of MS must be attributable to non-genetic factors and that the contribution of genetics is actually relatively minor.
Immunity: The immune system is designed to protect us from outside enemies, such as viruses or bacteria that cause illness. The immune system may also attack healthy body parts or tissues. Diseases in which this process happens are called autoimmune diseases. In multiple sclerosis, it is believed that the immune system attacks the myelin in the body.
Geography and climate: Multiple sclerosis most commonly affects people in North America, Europe, and Australia. It strikes people more frequently in locations farther away from the equator. For example, in the United States, the incidence of multiple sclerosis is much higher in northern states with temperate climates (seasonal changes) than in warmer southern states. The amount of daily sunlight exposure is a major factor in the geographical risk factors associated with developing MS. Sunlight helps the body manufacture vitamin D, which is reported lowered in those with MS. The more Northern climates have less available sunlight hours per day.
Infectious agents: Infectious agents, such as bacteria or viruses, may contribute to the development of MS. There is significant data that infection is involved in both the initiation of the disease and in damage to the nerves. Several organisms have been proposed as potential triggers, including human herpesvirus type 6 (Epstein-barr virus), Mycoplasma pneumoniae,and Chlamydia pneumoniae.
Environmental toxins: Exposure to chemical toxins, such as organic solvents, paint thinners, and pesticides, may be another possible trigger of MS. Exposure to heavy metals, such as mercury, has been implicated in MS. Mercury is believed to be one of the most toxic of all non-radioactive elements; it is widely known to affect neurological tissues. Exposure to dental amalgam (mercury) fillings has been suggested as a risk factor for developing MS.
Food allergies: Allergies and sensitivities to certain foods may also play a role in the development or exacerbation of MS. MS is most prevalent in areas where consumption of wheat gluten and milk are also high. Wheat gluten and cow's milk are common food allergens. This relationship has not been proven conclusively, but allergies may play some role in the onset or severity of MS. Components of some foods may act as triggers to the immune system, causing it to begin an inappropriate autoimmune response similar to the body's autoimmune response to bacteria and viruses. Consumption of cow's milk has also long been suspected to play a role in the development of MS. Researchers are not sure whether it is the high level of saturated fat that is harmful to people who have MS, or there may be more to the dairy connection than mere fat. One of the proteins in milk mimics a particular protein affiliated with human myelin. This milk protein could potentially trigger an autoimmune response to native myelin, leading to an MS episode.
Signs and symptoms
The hallmark symptoms of multiple sclerosis are unpredictable periods of exacerbation, remission, and progression. The most common early symptoms include sensory abnormalities, such as tingling, numbness, itching, tightness, burning, shooting pain in the back and limbs on neck flexion (called Lhermitte's sign), difficulty walking, blurred or double vision, red-green color distortion, eye pain, and vision loss.
Initial symptoms of MS may be brief and mild. The first serious attack usually lasts weeks or months and occurs between the ages of 20-40. Symptoms of the disease vary, depending on where the damage occurs, and range from minor physical annoyances to major disabilities. Other common symptoms include: balance and equilibrium abnormalities, such as dizziness, uncoordinated movements, and tremor; bladder and bowel dysfunction, such as urgency, incontinence (inability to control urine or fecal flow), nocturia, constipation; behavioral changes, such as mood swings or depression); cognitive dysfunction, such as impaired memory, reasoning, and concentration; facial numbness; and motor abnormalities, such as muscle weakness, spasticity, spasm; sexual dysfunction, including erectile dysfunction and sexual inactivity; hearing loss; and vision abnormalities, such as eye pain, vision loss in one eye, double vision (diplopia), and involuntary eye movement (nystagmus).
Muscle weakness can involve the extremities (arms and legs) on one side of the body (called hemiparesis), both legs (called paraparesis), or all four extremities (called quadraparesis). Muscles in the affected area may tighten (called spasticity) and contract spontaneously (called spasm or myoclonus).
Many people with MS experience fatigue and need to rest and sleep during the day in order to continue their activities. The degree of fatigue may not be related to the severity of other symptoms.
Diagnosis
Diagnosis of multiple sclerosis (MS) involves taking a family history and a history of symptoms, and performing a physical examination (including neurological examination) and various tests (including blood tests and imaging tests).
Blood tests: Many blood tests
may be used to determine if MS is present. They include a complete blood count (CBC), liver function tests, testing for Lyme disease, a creatine kinase test, and a DNA analysis (to determine if the disorder is genetic) among others. In some cases, a cerebrospinal fluid (CSF) analysis also is performed.
Cerebrospinal fluid analysis involves performing a spinal tap or lumbar puncture. In this procedure, about two tablespoons of cerebrospinal fluid is drawn into a needle inserted between two lumbar vertebrae and then examined under a microscope. In cases of MS, the doctor may see an elevation of protein and white blood cells in the cerebrospinal fluid. This procedure is usually performed in a hospital or clinic under local anesthesia, although general anesthesia can be used.
Imaging tests: Imaging tests, including computed tomography (CT scan), magnetic resonance imaging (MRI scan), and positron emission tomography (PET scan), may be used to detect damage (such as shrinkage) in the basal ganglia, structural abnormalities, and stroke (neurological damage due to a lack of oxygen to the brain).
Other imaging tests: An electromyogram (EMG) and an electroencephalogram (EEG) also may be performed. These tests are used to monitor electrical activity within the body and can help detect nerve and muscle disorders. EMG involves placing electrodes on the skin (surface EMG) or needles into the muscle (intramuscular EMG) to record electrical activity of the muscle. In an EEG, electrodes are attached to the scalp and connected to a machine that records electrical impulses in the brain.
Muscle biopsy: A muscle biopsy may also be performed to distinguish between nerve and muscle disorders. This procedure, which is performed under local anesthesia, involves making a small incision and removing a sample of muscle for microscopic evaluation to determine if the muscle tissue is being damaged. Following the procedure, patients may experience minor pain and bruising at the biopsy site for about one week.
Evoked potential tests: Evoked potentials are electrical signals generated by the nervous system in response to stimuli. Evoked potential tests (including somatosensory evoked potentials, visual evoked potentials, and brainstem auditory evoked potentials) are performed to evaluate sensory, visual, and auditory functions and detect slowed nerve impulse conduction caused by demyelination. In these tests, nerves responsible for each type of function are stimulated electronically and responses are recorded using electrodes placed over the CNS (brain and spine) and peripheral nerves (including the median nerve in the wrist and the peroneal nerve in the knee).
Complications
Because the effects of nerve injury are widespread, the many complications can be very severe and affect all parts of the body. Although not all individuals with multiple sclerosis (MS) experience all of the following complications, any of them can negatively affect the individual's quality of life.
Fatigue: Fatigue is one of the most common and debilitating MS symptoms and affects at least two thirds of patients with MS. Fatigue causes a general lack of energy that significantly limits daily functioning regardless of any neurologic symptoms or specific muscle weaknesses. Up to 40% of patients describe it as the most disabling MS symptom, which is higher than weakness, spasticity, motor control, or bowel or urinary problems. Many conditions that are common in MS, including sleep disorders, depression, hypersensitivity to sensation, hypothyroidism, medications, and heat, may contribute to fatigue. None fully explain the consistent presence or severity of this problem in MS. Researchers using imaging techniques have identified possible changes in part of the brain in MS that may play a role in the fatigue of MS.
Loss of mobility and spasticity: Nearly every individual with MS loses some mobility, which may take the form of impaired motor control, muscle weakness, impaired balance, tremor, and, importantly, spasticity. Spasticity is one of the primary symptoms of MS. It is characterized by weakness, loss of dexterity, and the inability to control specific movements. Spasticity is usually more severe in the legs and torso. Mobility can also be affected by many non-physical factors, including mental well-being, fatigue, and even the weather.
Pain: About two-thirds of MS patients experience pain at some point during the course of the disease and 40% are never pain free. MS causes many pain syndromes - some are acute (short-term) while others are chronic (long-term). Some worsen with age and disease progression. Pain syndromes associated with MS are trigeminal (facial) pain, powerful spasms and cramps, optic neuritis (pain in the eye), stiffened joints, and a variety of sensations including feelings of itching, burning, and shooting pain.
Bowel dysfunction: Bowel dysfunction, which can include constipation or fecal incontinence, is a serious problem for many MS patients. Constipation may be caused by the disorder itself or by medications used to treat spasms or other symptoms. Diarrhea may also occur.
Sexual dysfunction:Sexual dysfunction is a common problem in those with MS, occurring in over 70% of patients. Men are likely to have impotence and women have problems with vaginal lubrication, both leading to sexual dysfunction. It appears to be highly associated with urinary dysfunction.
Urinary urgency: Individuals with urinary urgency feel the need to urinate frequently and urgently. When urinary urgency takes place, the signals that coordinate urination are disrupted and the individual experiences an uncontrollable urge to urinate that can cause incontinence.
Incontinence:
Incontinence is the loss of bladder control. Sometimes MS will disrupt the nerve signals sent to the body parts that control urine movement allowing urine to be expelled involuntarily.
Nocturia:
Individuals with nocturia must awake frequently during the night to go to the bathroom. There are a number of causes for this type of incontinence, but those with MS may experience nocturia due to the interruption of brain impulses that travel up and down the spine to coordinate urination.
Urinary hesitancy: Urinary hesitancy refers to difficulty initiating urination. With MS, this problem may be caused by interruption of brain impulses that control that part of the urination process.
Visual problems: Vision problems that can occur with MS include: blurred or dimmed vision; pain with eye movement; blind spots, particularly involving central vision; color blindness; double vision; and nystagmus, or vision that jumps uncontrollably.
Difficulty swallowing: One-third to one-half of MS patients experience difficulty in chewing or swallowing, problems that may be caused or made worse by many MS medications.
Speech and hearing problems: Problems in speech may occur because of difficulty in controlling the quality of the voice and articulating words. Problems with language itself, however, are very rare in MS. Hearing problems also occur in MS and may affect speech.
Lung problems:As the muscles that control breathing weaken, the ability to cough is impaired and the individual with MS is at higher risk for pneumonia and other complications in the lungs. Breathing may become difficult, and may eventually require the use of a respirator to aid in breathing.
Osteoporosis: Osteoporosis, or the loss of bone density, and subsequent fractures are a common problem among individuals with MS. Osteoporosis is caused and worsened by immobility and by some MS medications. Fractures caused by falls can be far more serious in MS patients than in the normal population, leading to problems including deconditioning (loss of physical fitness) or even inability to walk, constipation (from pain-relieving medications such as opiates), and respiratory complications.
Cognitive problems: Cognitive problems, such as having trouble concentrating and solving problems, affect about half of MS patients. It has been found that more people with MS leave work because of such difficulties than because of physical problems. In about 10% of cases, mental dysfunction may be severe and resemble dementia. The severity of such mental changes appears to be associated with the degree of loss of brain tissue.
Depression: Between 40-60% of MS patients suffer from depression at some point over the course of the illness, and studies have reported risks for suicide ranging from 3-15%. There is some evidence that depression in multiple sclerosis is not only due to the social and psychological impact of MS but to the disease process itself. Furthermore, in one study, depression had biologic effects, such as increasing production of inflammatory cytokines (including interleukins) that could exacerbate the disease itself. Treating depression then may even help reduce the disease process. Doctors should assess patients for depression, even though there may be no obvious signs of it. It should be noted that the risk for suicide may be present even in patients who are not obviously depressed. Individuals at highest risk for suicide are those who live alone, those with a history of an emotional disorder (such as those with depression, anxiety, or alcohol abuse), a family history of mental illness, and people with high social stress.
Treatment
There is as yet no cure for multiple sclerosis (MS). Many individuals living with MS do well with no therapy at all, especially since many medications have serious side effects and some carry significant risks.
Medications:
Corticosteroids: The mainstay of treatment for MS is the use of corticosteroids. Corticosteroids, such as prednisone (Deltasone?) and intravenous (IV) methylprednisolone (SoluMedrol?), are frequently used for visual symptoms of MS and have been shown to prolong the onset of MS if used early in its course. Corticosteroids are also used for acute worsening in those people already diagnosed with MS. Corticosteroids are used in high doses and slowly tapered off over several weeks.
Side effects may include: heart failure, high blood pressure (hypertension), high blood sugar levels (hyperglycemia), high or low levels of sodium in the blood (hyper- or hyponatremia), increased risk for infection, low level of potassium in the blood (hypokalemia), personality changes (such as mood swings), stomach ulcer, and swelling (edema) caused by fluid retention.
Immune system modulators: Substances called interferons have also been approved to treat MS. Interferons are normally made by the body, mainly to combat viral infections. Interferons have been shown to decrease the worsening or relapse of MS. Unfortunately, the overall disease progression is not changed, and the side effects of interferons are poorly tolerated. Three forms of beta interferon (Avonex?, Betaseron?, and Rebif?) have now been approved by the U.S. Food and Drug Administration (FDA) for the treatment of relapsing-remitting MS. Beta interferon has been shown to reduce the number of exacerbations and may slow the progression of physical disability. When attacks do occur, they tend to be shorter and less severe. Immune system modulators have been reported to reduce exacerbations and physical disability. Side effects include flu-like symptoms (such as malaise, muscle aches, and fever) and inflammation (including pain, redness, and infection) at the injection site.
Glatiramer acetate (Copaxone?) is a drug that modifies actions of the immune system that may affect the progression of MS. Glatiramer acetate has been shown to decrease the relapse rates of MS by 30% and appears to also have an effect on the overall disabling effects of MS. It is given by subcutaneous injection every day and usually is well tolerated. Glatiramer acetate is better tolerated than the interferons and has fewer side effects.
Side effects include chest tightness and palpitations (irregular heart beat).
Natalizumab (Tysabri?) is a monoclonal antibody for the treatment of patients with relapsing forms of MS. Natalizumab was withdrawn from the U.S. market in 2004, but in 2006, the FDA re-approved the limited use of natalizumab in the treatment of MS. The safety and efficacy of natalizumab beyond two years are unknown. Natalizumab has caused a confirmed case and one suspected case of progressive multifocal leukoencephalopathy (PML), a rare and frequently fatal demyelinating disease of the central nervous system.
Other medications: An immunosuppressant treatment normally used in cancer, mitoxantrone (Novantrone?), is approved by the U.S. Food and Drug Administration (FDA) for the treatment of advanced or chronic MS. Side effects of this medication include extreme fatigue, nausea, and vomiting. During clinical trials, this drug was shown to significantly reduce the frequency of attacks in people with relapsing MS. After receiving FDA approval, however, the drug was withdrawn from the market because of reports from three people who developed a rare, often fatal, brain disorder called progressive multifocal leukoencephalopathy. In 2006, after reconsideration of the drug's benefits for people with multiple sclerosis, the FDA agreed to allow the drug to be marketed again under specific conditions. Mitoxantrone is only used for short term (less than three years). Other medications used for MS that suppress immunity include the chemotherapy drugs methorexate (Rheumatrex?), azathioprine (Imuran?), and cyclophosphamide (Cytoxan?).
Muscle weakness, numbness, and stiffness (spasticity) may be treated using medication taken regularly or as needed. These drugs include muscle relaxants, such as tizanidine (Zanaflex?) and baclofen (LIoresal?), benzodiazepines, such as diazepam (Valium?), and anticonvulsants, such as carbamazepine (Tegretol?). Side
effects of baclofen and tizanidine include drowsiness, dizziness, and fatigue. Side effects of benzodiazepines include downiness, fatigue, and a potential for addiction. Anticonvulsants may cause drowsiness, fatigue, and headache.
Fatigue may be treated using amantadine hydrochloride (Symmetrel?), pemoline (Cylert?), or modafinil (Provigil?) when frequent napping, adequate sleep at night, and daily exercise do not help. Side effects include nausea, dizziness, and headache. Immune system improvement and alterations in brain chemistry are the likely mechanism of amantadine's action in MS.
Balance and equilibrium abnormalities (such as difficulty walking, uncoordinated movements, tremor) may be treated using medications such as diazepam (Valium?), clonazepam (Klonopin?), propranolol (Inderal?), and mysoline (Primidone?).
Bladder dysfunction, including incontinence (inability to control bladder emptying) and nocturia (frequent urination at night), may be treated using medications such as oxybutynin (Ditropan?), tolterodine (Detrol?), and hyoscyamine (Levsin?). Bladder-emptying regimens, intermittent catheterization, and surgery may also be used. Side effects of medication include headache, dry mouth, constipation, blurred vision, and dizziness.
Constipation may be worsened by inactivity. Treatment includes eating a high-fiber diet, increasing fluid intake, daily exercise, and stool softeners, such as docusate sodium (Colace?). Rectal suppositories or enemas occasionally may be required.
Sexual dysfunction may occur in men and women with MS. Treatments are available for erectile dysfunction and female sexual dysfunction. Vaginal dryness can be improved by using over-the-counter (OTC) lubricants such as KY Jelly?. Male impotence is treated with drugs for erectile dysfunction, including sildenafil (Viagra?) and tadalafil (Cialis?).
Other treatments:
Psychotherapy:
Central nervous system abnormalities associated with MS and the psychological and social impact of the disorder often results in mood swings and depression. MS support groups, counseling, and/or antidepressants may be helpful. Tricyclic antidepressants, particularly amitriptyline (Elavil?), are effective for the treatment of nerve pain. Side effects of these antidepressants include dry mouth, constipation, blurred vision, and sedation.
Rehabilitation: Treatment for MS may also include physical therapy, occupational therapy, and speech therapy. Physical therapy uses exercises to help strengthen muscles, reduce pain and spasticity, and improve balance and walking. Assistive devices (such as canes, braces, or walkers) may be used to help individuals remain as independent as possible.
Occupational therapy: Occupational therapy increases independent function in activities of daily living that focus on grooming, dressing, eating, driving, and handwriting. Adaptations in the work and home environment (such as shower chairs, hand rails, or ramps) are based on individual needs.
Speech therapy: Speech therapy may be helpful if slurred speech (dysarthria) or difficulty swallowing (dysphagia) develops.
Caregiver support:
Movement disorders confront individuals and their caregivers with many complex problems that must be dealt with for the life of the patient. While it may be emotionally difficult, it is important for patients and caregivers to make informed, carefully considered decisions regarding the future while the patient is capable of making his or her contribution to a planned course of action. Many support groups exist for caregivers of individuals with MS. A doctor or other healthcare professional can help with caregiver support choices.
Plasma exchange (plasmapheresis):
Plasma exchange may help restore neurological function in individuals with sudden severe attacks of MS-related disability who do not respond to high doses of steroid treatment. This procedure involves removing some of the blood and mechanically separating the blood cells from the fluid (plasma). The blood cells then are mixed with a replacement solution, typically albumin, or a synthetic fluid with properties like plasma. The solution with the individual's blood is then returned to their body. Replacing plasma may dilute the activity of the destructive factors in the immune system, including antibodies that attack myelin, and help the individual to recover. Plasma exchange has no proven benefit beyond three months from the onset of the neurological symptoms.
Prognosis: Most individuals with MS have a relatively normal life span and life expectancy is about 35 years after onset. After 25 years, approximately two-thirds of patients remain mobile. The disorder eventually results in physical limitations in about 70% of patients.
Integrative therapies
Unclear or conflicting scientific evidence:
Bovine colostrum: Colostrum, or bovine (cow) colostrum, is the pre-milk fluid produced by cow mammary glands during the first two to four days after giving birth. Bovine colostrum delivers growth, nutrient, and immune factors to the offspring. Bovine colostrum has been used for multiple sclerosis, although early results do not indicate any benefit. Additional study is needed in this area.
Avoid if allergic to dairy products. Use bovine colostrum cautiously because toxic compounds, such as polychlorinated biphenyls (PCBs), dichlorodiphenyltrichloroethane (DDT), and dichlordiphenyldichloroethylene (DDE), have been found in human colostrum and breast milk. Thus, it is possible that these agents may be found in bovine colostrum. Avoid with, or if at risk of, cancer. Use cautiously with immune system disorders or atherosclerosis (hardening of the arteries). Use cautiously if taking medications, such as anti-diarrheal agents (e.g. Imodium?), insulin, or CNS agents (such as amphetamines, caffeine). Avoid if pregnant or breastfeeding.
Creatine: Creatine is naturally synthesized in the human body from amino acids primarily in the kidney and liver, and transported in the blood for use by muscles. Approximately 95% of the body's total creatine content is located in skeletal muscle. Results from clinical study suggest that creatine supplementation does not improve work production in individuals with multiple sclerosis. Large, well designed studies are needed.
Creatine may increase the risk of adverse effects, including stroke, when used with caffeine and ephedra. In addition, caffeine may reduce the beneficial effects of creatine during intense intermittent exercise. Avoid if allergic to creatine or with diuretics (like hydrochlorothiazide, furosemide (Lasix?)). Use caution in asthma, diabetes, gout, kidney, liver or muscle problems, stroke, or a history of these conditions. Avoid dehydration. Avoid if pregnant or breastfeeding.
Evening primrose oil: Evening primrose (
Oenothera biennis) oil (EPO) contains an omega-6 essential fatty acid, gamma-linolenic acid (GLA), which is believed to be the active ingredient. It is theorized that primrose oil may be helpful in patients with multiple sclerosis (MS) based on laboratory studies. Limited evidence is available in humans, and a firm conclusion is not possible at this time.
Avoid with seizure disorders. Use cautiously if taking drugs prescribed for mental illness. Stop use two weeks before surgery with anesthesia. Avoid if pregnant or breastfeeding.
Feldenkrais Method?: Early evidence suggests that steadiness and comfort with daily movements, depression, anxiety, self-esteem, and overall quality of life may improve in patients with multiple sclerosis who use Feldenkrais bodywork or participate in Awareness Through Movement? sessions. More research is necessary. There is currently a lack of available scientific studies or reports of safety of the Feldenkrais Method?.
Ginkgo: Ginkgo (
Ginkgo biloba) has been used medicinally for thousands of years. Today, it is one of the top selling herbs in the United States. Based on laboratory study, it has been suggested that ginkgo may provide benefit in multiple sclerosis (MS). Human research is limited to several small studies that have not found consistent benefit. Additional research is needed.
Avoid if allergic or hypersensitive to members of the Ginkgoaceaefamily.
If allergic to mango rind, sumac, poison ivy or oak or cashews, then allergy to ginkgo is possible. Avoid with blood-thinners (like aspirin or warfarin (Coumadin?)) due to an increased risk of bleeding. Ginkgo should be stopped two weeks before surgical procedures. Ginkgo seeds are dangerous and should be avoided. Skin irritation and itching may also occur due to ginkgo allergies. Do not use ginkgo in supplemental doses if pregnant or breastfeeding.
Magnet therapy: The use of magnets to treat illness has been described historically in many civilizations, and was suggested by ancient Egyptian priests and in the 4th century BC by Hippocrates. The 15th Century Swiss physician and alchemist Paracelsus theorized that magnet fields play an important role in Western medicine, including use for magnetic resonance imaging (MRI), pulsed electromagnetic fields, and experimental magnetic stimulatory techniques. Initial studies of electromagnetic field therapy for multiple sclerosis report varied results, with one trial suggesting improvement in spasticity but not other symptoms, and a different study finding improvement in a combined rating for bladder control, cognitive function, fatigue level, mobility, spasticity, and vision (but no change in overall symptom score). Due to methodological weaknesses of these studies, it remains unclear if electromagnetic field therapy is beneficial in patients with multiple sclerosis.
Avoid with implantable medical devices, such as heart pacemakers, defibrillators, insulin pumps, or hepatic artery infusion pumps. Avoid with myasthenia gravis or bleeding disorders. Avoid if pregnant or breastfeeding. Magnet therapy is not advised as the sole treatment for potentially serious medical conditions, and should not delay the time to diagnose a condition. It should not replace treatment with more proven methods. Patients are advised to discuss magnet therapy with their qualified healthcare providers before starting treatment.
Massage: Initial research reports that massage may improve anxiety, depression, self-esteem, body image, and social functioning in patients with multiple sclerosis. Benefits on the disease process itself have not been well evaluated. Additional research is necessary before a firm conclusion can be drawn.
Avoid with bleeding disorders, low platelet counts, or if on blood-thinning medications (such as heparin or warfarin/Coumadin?). Areas should not be massaged where there are fractures, weakened bones from osteoporosis or cancer, open/healing skin wounds, skin infections, recent surgery, or blood clots. Use cautiously with history of physical abuse or if pregnant or breastfeeding. Massage should not be used as a substitute for more proven therapies for medical conditions. Massage should not cause pain to the client.
Physical therapy: There is currently insufficient evidence for the treatment of multiple sclerosis with physical therapy (PT). Additional research is needed in this area.
Not all physical therapy programs are suited for everyone, and patients should discuss their medical history with their qualified healthcare professionals before beginning any treatments. Based on the available literature, physical therapy appears generally safe when practiced by a qualified physical therapist. Physical therapy may aggravate pre-existing conditions. Persistent pain and fractures of unknown origin have been reported. Both morning stiffness and bone erosion in patients have been reported, although the cause is unclear. All therapies during pregnancy and breastfeeding should be discussed with a licensed obstetrician/gynecologist before initiation.
Psychotherapy: Psychotherapy is an interactive process between a person and a qualified mental health professional (psychiatrist, psychologist, clinical social worker, licensed counselor, or other trained practitioner). Its purpose is the exploration of thoughts, feelings and behavior for the purpose of problem solving or achieving higher levels of functioning.Psychotherapy, including group therapy and individual cognitive-behavioral therapy, may reduce major depression in multiple sclerosis patients and improve quality of life. More research is needed to verify these preliminary results.
Psychotherapy is not always sufficient to resolve mental or emotional conditions. Psychiatric medication is sometimes needed. The reluctance to seek and use appropriate medication may contribute to worsening of symptoms or increased risk for poor outcomes. In order to be successful, psychotherapy requires considerable personal motivation and investment in the process. This includes consistent attendance and attention to treatment recommendations provided by the practitioner. Not all therapists are sufficiently qualified to work with all problems. The client or patient should seek referrals from trusted sources and should also inquire of the practitioner's training and background before committing to work with a particular therapist. Some forms of psychotherapy evoke strong emotional feelings and expression. This can be disturbing for people with serious mental illness or some medical conditions.
Reflexology: Reflexology involves the application of manual pressure to specific points or areas of the feet that are believed to correspond to other parts of the body. Reflexology treatment may be beneficial in the management of some motor or sensory symptoms of multiple sclerosis.
Avoid with recent or healing foot fractures, unhealed wounds, or active gout flares affecting the foot. Use cautiously and seek prior medical consultation with osteoarthritis affecting the foot or ankle, or severe vascular disease of the legs or feet. Use cautiously with diabetes, heart disease or the presence of a pacemaker, unstable blood pressure, cancer, active infections, past episodes of fainting (syncope), mental illness, gallstones, or kidney stones. Use cautiously if pregnant or breastfeeding. Reflexology should not delay diagnosis or treatment with more proven techniques or therapies.
Vitamin D: Vitamin D is found in numerous dietary sources such as fish, eggs, fortified milk, and cod liver oil. The sun is also a significant contributor to our daily production of vitamin D. Scientists have detected multiple sclerosis rates to be lower in areas with greater sunlight and higher consumption of vitamin D rich fish. Preliminary research suggests that long-term vitamin D supplementation decreases the risk of multiple sclerosis. However, additional research is necessary before a firm conclusion can be reached.
Avoid if allergic or hypersensitive to vitamin D or any of its components. Vitamin D is generally well-tolerated in recommended doses; doses higher than recommended may cause toxic effects. Use cautiously with hyperparathyroidism (overactive thyroid), kidney disease, sarcoidosis, tuberculosis, and histoplasmosis. Vitamin D is safe in pregnant and breastfeeding women when taken in recommended doses.
Yoga: Yoga is an ancient system of relaxation, exercise, and healing with origins in Indian philosophy. Yoga has been described as "the union of mind, body, and spirit," which addresses physical, mental, intellectual, emotional, and spiritual dimensions towards an overall harmonious state of being. There is limited study of yoga therapy in patients with multiple sclerosis. Further research is needed.
Yoga is generally considered to be safe in healthy individuals when practiced appropriately. Avoid some inverted poses with disc disease of the spine, fragile or atherosclerotic neck arteries, extremely high or low blood pressure, glaucoma, detachment of the retina, ear problems, severe osteoporosis, cervical spondylitis, or if at risk for blood clots. Certain yoga breathing techniques should be avoided with heart or lung disease. Use cautiously with a history of psychotic disorders. Yoga techniques are believed to be safe during pregnancy and breastfeeding when practiced under the guidance of expert instruction. However, poses that put pressure on the uterus, such as abdominal twists, should be avoided in pregnancy.
Strong negative scientific evidence:
Phenylalanine: In clinical study, treatment with Cari Loder's regimen (L-phenylalanine, lofepramine, and intramuscular vitamin B12) did not show benefit for patients with multiple sclerosis. Additional research is needed to confirm these preliminary results.
Use cautiously in patients on a monoamine oxidase inhibitor (MAOI), or with hypertension, anxiety disorders, psychiatric disorders, or sleep disorders. Avoid in patients with Parkinson's disease or tardive dyskinesia. Avoid in patients with hypersensitivity to phenylalanine or with phenylketonuria (PKU).
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Bibliography
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Farinotti M, Simi S, Di Pietrantonj C, et al. Dietary interventions for multiple sclerosis. Cochrane Database Syst Rev. 2007;(1):CD004192.
Glinsky J, Harvey L, Van Es P. Efficacy of electrical stimulation to increase muscle strength in people with neurological conditions: a systematic review. Physiother Res Int. 2007;12(3):175-194 [Epub ahead of print].
Kappos L, Freedman MS, Polman CH, et al; BENEFIT Study Group. Effect of early versus delayed interferon beta-1b treatment on disability after a first clinical event suggestive of multiple sclerosis: a 3-year follow-up analysis of the BENEFIT study. Lancet. 2007;370(9585):389-97.
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The Movement Disorder Society. .
Multiple Sclerosis Foundation. .
National Association of Neurological Disorders and Stroke. .
National Multiple Sclerosis Society. .
Natural Standard: The Authority on Integrative Medicine. .
Worldwide Education and Awareness for Movement Disorders. .
Prevention and self-management
Diet: Nutritional changes along with the addition of supplements (vitamins, minerals, and herbs) may be effective in reducing symptoms associated with neurological disorders such as multiple sclerosis (MS).
It is best to avoid caffeine and other stimulants, alcohol, and tobacco.
It may be best to eliminate potential food allergens, including dairy (milk, cheese, and sour cream), eggs, nuts, shellfish, wheat (gluten), corn, preservatives, and food additives (such as dyes and fillers). Food allergies and sensitivities can be a contributing factor in MS.
It may be best to avoid refined foods such as white breads, pastas, and sugar. Doughnuts, pastries, bread, candy, soft drinks, and foods with high sugar/fructose corn syrup content may all contribute to worsening symptoms of neurological disorders.
Food can be cut into small pieces, softened, or pureed to ease swallowing and prevent choking. While some foods may require the addition of thickeners, other foods may need to be thinned. Dairy products, in particular, tend to increase the secretion of mucus, which in turn increases the risk of choking.
Exercise: Maintaining physical fitness is important to those suffering from movement disorders such as MS. Those with movement disorders who exercise and keep active tend to do better, with fewer symptoms and a slower disease progression than those who do not. A daily regimen of exercise can help the person feel better physically and mentally. Individuals should walk as much as possible, even if assistance is necessary. Talking with a healthcare provider about an exercise program is important.
Types of multiple sclerosis
Multiple sclerosis is classified according to frequency and severity of neurological symptoms, the ability of the CNS to recover, and the accumulation of damage.
Primary progressive MS: Primary progressive MS causes steady progression of symptoms with few periods of remission. With primary progressive MS, symptoms get worse over time, but there are no relapses or remissions. Some people with primary progressive MS have brief periods of time during which their symptoms either stay the same or improve slightly. This type of MS is most often diagnosed in people over the age of 40.
Relapsing-remitting MS: In relapsing-remitting MS, symptoms come (relapses) and go (remissions). Symptoms may evolve over several days and then disappear, although some symptoms may remain. The course varies from person to person, but on average, relapses appear every two years. The period between relapses can be very long, as much as 20 years or more. A small percentage of people have only a single attack in their lifetime.
Relapsing-remitting MS is the most common form of the disease and is most frequently diagnosed between the ages of 20-40. Up to 80% of individuals with MS are diagnosed with the relapsing-remitting type. Only 50% of people with RR MS develop secondary progressive MS within the first 10 years.
Secondary progressive MS: Secondary progressive MS is initially similar to relapsing-remitting MS and eventually progresses to MS with no remission. The change from relapsing-remitting MS to secondary progressive MS generally occurs five to 15 years after the disease begins. With secondary progressive MS, neurological symptoms tend to worsen progressively, with or without superimposed relapses. Over time, it is common for secondary progressive patients to have fewer attacks (sometimes none at all), despite continual progression. About 30% of individuals with MS have secondary progressive disease.
Relapsing-progressive MS: Relapsing-progressive MS is a rare form of MS with a gradual worsening of symptoms from the beginning, with superimposed relapses and remissions.