Bluelf NMSS Notes

Notes from NMSS Home Page

The following are some notes I retrieved from the Internet home of the National Multiple Sclerosis Society, This was some of the first information I obtained. Many thanks to that organization and especially our location chapter. They have been of great help to me. I suggest visiting the NMSS Homepage.

SYMTOMS
1. Dizziness and Vertigo
2. Speech Disorgers
3. Visual Symptons
3a....... Optic Neuritis
4. Forgetfulness or Confusion
5. Fatigue
5a........Symmetrel
5b........Fatigue, A Medical Overview

COOLING IT

HIRING HELP AT HOME?

ACCORDING TO THE LAW

HEALTH INSURANCE FROM YOUR EMPLOYER

PSYCHOLOGICAL ISSUES AMONG ADOLESCENTS
A. Children and MS
B. Teenagers and MS

back to the MS Page

DIZZINESS AND VERTIGO

Dizziness is a common symptom of MS. Patients generally report a feeling of being off balance, or lightheaded, or in some cases having the sensation that they or their surroundings are spinning--this is called vertigo. These symptoms are due to lesions in the complex nervous pathways which coordinate visual, positional, and spatial input to the brain to produce and maintain equilibrium.

In very severe cases of dizziness or vertigo, a short course of corticosteroids may be needed. Usually, the symptoms respond to a trial of antimotion sickness drugs such as meclizine ('Antivert' or 'Bonine'), or the newer transdermal scopolamine patches. Other conditions such as middle ear inflammation or certain benign tumors of the acoustic nerve, as well as non-neurologic problems, may also produce dizziness, and your physician should be consulted when this symptom is prominent or persistent.

SPEECH DISORDERS AND THERAPY

Speech disorders are not uncommon in MS. They are usually the result of weakness and/or incoordination of the tongue, oral and facial musculature involved in producing sounds and words. Medically, speech disorders are known as dysarthrias. There may be several different patterns of speech disturbance. One pattern that is commonly associated with MS is so-called 'scanning' speech. Scanning dysarthria produces speech in which the normal 'melody 'or speech pattern is disrupted, with abnormally long pauses between words or individual syllables of words. Other dysarthrias may be manifest, such as slurring of words due to weakness of the face or tongue, explosive dysarthrias, or nasal speech, which sounds as though the person has a cold or nasal obstruction, but which is actually due in part to dysfunction of the palatal musculature. Dysarthrias are commonly associated with other symptoms caused by lesions in the brainstem, (an area of the brain which contains pathways for coordination and innervation of the muscles of the face and head) such as tremor, head shaking, or incoordination.

Many people can be aided by the assistance of a speech therapist, who can evaluate and help to improve speech patterns, enunciation and oral communication in general. When spoken communication is no longer feasible, there are a wide variety of augmentative devices available. These include simple alphabet cards or picture cards, hand held communicators which print out a tape, and can be as sophisticated as computers which respond to eyeblinks or a 'sip and puff' switch.

Since many persons with dysarthria also have dysphagia (difficulty in swallowing), speech therapists are also trained to evaluate, diagnose and relieve these problems.

VISUAL SYMPTOMS

Visual symptoms are not uncommon in multiple sclerosis patients. They may be the result of inflammation of the optic nerve (optic neuritis), or lesions along the pathways that control eye movements and visual coordination.

Optic neuritis may result in blurring or graying of vision, or monocular blindness. A scotoma or dark spot may occur in the center of the visual field. Optic neuritis is almost always self-limiting and patients generally make a good recovery. Recent studies suggest that treatment with IV methylprednisolone followed by a tapered course of oral steroids may be useful.

Nystagmus, or uncontrolled horizontal or vertical eye movements, is another common symptom. Nystagmus may be mild and only occur with extreme lateral gaze, or it may be severe enough to impair vision. Some drugs and special prisms have been reported to be successful in treating the visual deficits caused by nystagmus, and a related eye movement disorder, opsoclonus, which causes oscillopsia or 'jumping vision'.

Diplopia, or double vision, occurs when the pair of muscles that control a particular eye movement are not perfectly coordinated due to muscle weakness in one or both pairs. In this case, the images are not properly fused, and the patient perceives a false double image. Diplopia usually resolves on its own. In some cases, a brief course of corticosteroids may be helpful. Special lenses or patching one eye is also useful.

OPTIC NEURITIS (ON)

Optic neuritis is an inflammation of the optic nerve, the nerve that transmits light and visual images from the retina to the brain. It is also known as retrobulbar neuritis, as the nerve is behind ('retro') the globe of the eye.

It has been estimated that about 55% of patients with MS will have an episode of optic neuritis. Frequently, it is the first symptom of the disease. While estimates of the subsequent development of MS in a person who presents with optic neuritis vary, studies with up to 10 years of follow-up have demonstrated that approximately 50-60% of patients with isolated optic neuritis go on to develop MS. A more recent study reported that those persons with optic neuritis who had abnormalities in their spinal fluid were more likely to develop MS. Other studies have demonstrated that a majority of patients with optic neuritis have evidence of demyelination in the brain as evidenced on MRI scanning. While other disease processes can cause optic neuritis, in a young, otherwise healthy person, MS is most likely to be the etiology.

Optic neuritis is generally experienced as an acute blurring, graying or loss of vision, almost always in one eye, although rarely both eyes may be affected at the same time. There may or may not be pain in the affected eye. The visual deficit usually reaches its maximum within a few days, and generally improves within 8 to 12 weeks. Recent studies suggest that a short course of IV methylprednisolone followed by a tapered course of oral steroids may be useful in helping to reverse and restore vision, although there is no definitive evidence that treatment with steroids effects a more complete recovery than that which would have happened without treatment.

A person may have a subclinical episode of optic neuritis. That is, there may be demyelination of the optic nerve that has occurred without affecting visual function. In these cases, visual evoked potentials are very useful in demonstrating evidence of lesions along the optic pathways.

FORGETFULNESS OR CONFUSION

MS has the potential to affect brain functions either directly or indirectly. The idea is upsetting. But the facts, emerging from recent research, are encouraging. Severe damage to personality, emotions and the intellect are not common. Mild problems are.

Researchers such as Dr. Stephen Rao of the Medical College of Wisconsin have found that about half of all people with MS show no evidence at all of intellectual problems. Of the other half, about 40 percent have mild dysfunction, while about 10 percent have moderate to severe impairments.

Which Intellectual Functions Might Be Affected?

--- Memory or recall problems are the most frequently reported. Memory loss seems to be confined largely to recent events.

--- Abstract reasoning and problem-solving abilities are sometimes affected. These include the capacity to analyze a situation, identify the salient points, plan a course of action, and carry it out. Some people with MS report that they sometimes sense that their judgment is poor.

--- Verbal fluency is still another area affected in MS. Fluency problems are different from MS speech problems, which slow speech down or change voice quality. A fluency problem often manifests itself as the 'tip-of-the-tongue' phenomenon.

--- Speed of information processing. Both recall and fluency skills require rapid processing of information. Dr. Rao has completed a study in which he found that people with MS performed as well as control volunteers on a specialized memory task but they did so at a significantly slower speed.

What Can Be Done To Alleviate Intellectual Problems?

--- Get it out in the open. Talk over your concerns with your doctor or nurse.

--- Share with others. Very often, fears about a problem are much worse than the reality.

--- In MS support groups or educational meetings, intellectual problems or cognitive dysfunction are a frequent topic of discussion.

--- Make it a family affair. Family members may not realize that the person with MS has some intellectual loss due to this disease. Family members and friends need help to develop an understanding of what is going on.

--- Get counseling if it seems indicated.

--- Consider Professional Evaluation

A formal neuropsychological evaluation may require several hours, and it is costly. The decision to go ahead should be made after discussions with your physician, family, and any other professionals who might be involved in your care. Other causes for intellectual problems should be carefully ruled out, and preliminary, less-expensive testing considered initially.

Assessment of intellectual function should be done by a qualified neuropsychologist, a specialist in the behavioral changes caused by brain disease or trauma, preferably one who has had experience with people who have MS.

About Cognitive Rehabilitation

Today, it is routine to consider some form of cognitive rehabilitation after a head injury or stroke. Not so in MS. But the MS field is rapidly catching up. In the last few years, the use of cognitive rehabilitation in MS has increased dramatically as psychologists, occupational therapists, and speech pathologists have developed techniques for the more common problems.

FATIGUE

Fatigue is a common and often disabling symptom of MS. Estimates are that fatigue occurs in about 80% of MS patients. It may be the most prominent symptom in a patient who otherwise has minimal neurologic impairment, and can significantly interfere with the person's ability to work and function.

Studies by MS researchers are beginning to delineate the characteristics of MS fatigue that differentiate it from fatigue experienced by persons without the disease. MS-related fatigue is more likely to be worsened by heat, comes on more easily, is generally more severe, and is more likely to interfere with daily responsibilities. It does not appear to be strongly correlated with depression or degree of physical impairment, and may occur first thing in the morning even if the patient has had a restful full night's sleep.

The etiology of fatigue in MS is currently unknown. Ongoing studies are seeking to find an objective test that can be used as a marker for fatigue and precise ways to quantitate it. Certain drugs have been shown to be effective in treating fatigue, and double blind controlled studies of these agents are currently in progress.

Because fatigue may also be caused by several treatable medical conditions such as thyroid disease or anemia, it is advisable to consult with your physician if this symptom becomes problematic.

A good deal of emphasis has been placed on identifying types of fatigue in MS in order to choose the most effective management methods. Linda Coulthard-Morris and Dr. Timothy L. Vollmer of the Rocky Mountain MS Center in Englewood, Colorado, distinguish seven types of fatigue which may occur alone or in combination in a person with MS.

NORMAL FATIGUE: Physical, mental and emotional exertion makes everyone tired. There's nothing medically negative about this fatigue. It resolves with rest or sleep.

FATIGUE FROM DIET PROBLEMS: The factors might include sugar snacking, low carbohydrate intake, fad diets, or alcohol abuse.

FATIGUE FROM SLEEP DISTURBANCE: MS symptoms such as bladder problems, spasticity, pain and random tingling, burning or numb sensations--most of which can be treated to some degree--can interfere with restful sleep, sometimes without the person's full awareness. Some medications and some plain bad habits also contribute to poor sleep.

'DECONDITIONING' FATIGUE: Deconditioning takes place when muscles aren't used. People who have increased weakness, heat sensitivity, and fatigue can easily be caught in a vicious cycle in which less activity leads to loss of muscle strength which leads to even less activity and more weakness, and worse fatigue.

'DISABILITY' FATIGUE: The effects of MS on muscle control, coordination, and strength inevitably mean it takes more effort to accomplish routine tasks. The energy used up in compensating for disabilities is significant and should be examined. Mobility aids and energy-saving strategies can provide some relief.

FATIGUE FROM DEPRESSION: Not all MS fatigue is caused by depression, but clincal depression is common in America today. Estimates of its rate in people with MS range from 14% to 54%. Feelings of apathy, exhaustion, helplessness, worthlessness, fits of irritability or anger, loss of interest in food or sex, sleeping too much, sleeping too little--any of these are signs of depression if they persist without relief for two or more weeks. Depression can be treated with drugs and supportive therapy.

'NEUROMUSCULAR' FATIGUE: This MS symptom occurs when a person who has no trouble walking across a room, develops a limp after going a block and is close to collapse after three or four blocks. The physical basis is not fully understood but the phenomenon suggest that a condition builds up with repetitive use of nerve fibers that have demyelinated sections (where MS has done damage). The rise in body temperature caused by repetitive activity is probably not the culprit.

AMANTADINE HYDROCHLORIDE ('SYMMETREL')

Amantadine hydrochloride ('Symmetrel') is one of several agents that are currently being evaluated for the treatment of fatigue caused by MS. Amantadine is an antiviral agent that is usually given to elderly or chronically ill people to prevent influenza, and is also used in the treatment of Parkinson's Disease. Amantadine was serendipitously found to alleviate fatigue in an MS patient who was being treated for the flu, and this led to controlled clinical trials. These studies demonstrated that a significant number of patients who received amantadine had relief of fatigue compared to a placebo group.

'Symmetrel' should be used under a physician's supervision. The usual side effects include nausea, dizziness or insomnia, but these occur rarely, and the drug is generally well tolerated.

Fatigue, A Medical Overview Shows the Many Aspects of this Problem

- It 's a total body give-out.
- My legs turn to cement.
- All I can think is I have to lie down.

Does this sound familiar? By the best current estimates, more than 75% of people with MS have fatigue. Overwhelming fatigue that interferes with work, fun, and important obligations, and brings people to doctors offices asking for relief. Moreover, people say their fatigue is sometimes misinterpreted by close family let alone by co-workers, friends, or employers.

- My family thinks I m depressed. They want me to see a shrink.
- My friends say I just don t try hard enough.
- My boss acts like I m faking.

According to Dr. Lauren Krupp, a neurologist at State University of New York at Stony Brook, who has studied fatigue with the help of a National MS Society research grant, MS fatigue is distinguished by the sheer impact it has on daily living.

We don t have a good biological explanation for this symptom and we don t have a laboratory test to measure it, Dr. Krupp said. She and her colleague, Dr. Patricia Coyle, have been able to distinguish MS fatigue from fatigue caused by depression and to clarify fatigue and cognitive dysfunction (the poor memory and slowed thinking processes that can also affect some people with MS).

A good deal of emphasis has been placed on identifying types of fatigue in MS in order to choose the most effective management methods. Linda Coulthard-Morris and Dr. Timothy L. Vollmer of the Rocky Mountain MS Center in Englewood, Colorado distinguish eight types of fatigue which may occur alone or in combination in a person with MS.

COOLING IT

It is common knowledge that heat worsens MS symptoms for many people. Very small elevations of the temperature in the brain or spinal cord impair conduction along the pathways important for movement and sensation. The technical explanation is well known: as temperature rises, sodium ions move faster across nerve-cell membranes and create electrical energy less efficiently.

The body produces most of its heat as a natural consequence of being alive. This activity is called the resting metabolic rate. Everything else one does adds more heat: sitting up, smiling, movement of every kind. There is even a 24-hour cycle of body temperature that can affect those who are most heat-sensitive.

Exposure to a warm environment raises body temperature. A short walk on a hot day or sitting in a hot car may result in significant problems for a person with MS.

Heat not only causes an increase in symptoms for many, but people with MS may have impaired heat-loss mechanisms. Sweating in response to high temperatures or exercise may be less than normal. Increased blood flow to the skin--the mechanism which brings heat to the body surface so it can be lost--may also be less than normal. The heart rate may not increase normally in response to heat or physical exercise. Moreover, low levels of physical activity often result in a lower volume of blood in the body, further reducing one's heat-dissipating capacity. Heat (or cold) may be stored in the legs and arms.

Think first in terms of prevention. Plan to avoid hot environments, long car trips, exercise in warm places, or spending time out of doors during the heat of the day. Protection helps. Wearing light-colored cotton clothing is far cooler than wearing nothing at all. Keep your head covered and avoid direct sunlight. Be sure your fluid intake is adequate. (Since muscle cramping can occur if sweat loss is replaced by water alone, drink diluted fruit juice or electrolyte-balanced 'sports' drinks.)

For emergency heat relief, many people carry a cooler of drinks and cold gel pads. Pads can be used on the head, neck, or extremities. A spray bottle to moisten clothing will promote evaporative heat loss. You can also take advantage of the way cold is stored in your legs, arms or back. Since legs constitute a considerable percentage of body mass, you can essentially create your own refrigerator to carry with you by using deep cooling.

Sit in a bathtub or put your legs into a large plastic wastebasket of tepid water. Add cold water gradually, allowing yourself time to accommodate to the cold. You'll need at least 30 minutes of cold exposure to accomplish deep cooling. The cooler blood in your legs and lower body will slowly circulate and help keep your temperature down.

While it is always easier to stay out of trouble than to correct problems once they have developed, remember that you will recover from heat-related neurologic problems when your body cools down.

HIRING HELP AT HOME?

When one member of the family becomes disabled, roles within the family necessarily change. A person who is used to taking care of the family or being the income-provider may become dependent while another person in the family is forced to take on unfamiliar responsibilities. For a single person, the changes may involve unexpected dependence on non-family members. For some, just the word, 'dependence' can trigger unpleasant feelings. People who can talk openly about their fears, anxiety, frustration and doubts will be more able to deal successfully with new circumstances.

Before considering whom to hire, your needs have to be identified. Needs usually fall into five general categories: Medical (for example, bowel and bladder management, range-of-motion exercises, occupational therapy); Personal care (bathing, dressing, grooming, toileting, transferring, hair care, meal preparation, wheelchair and scooter maintenance, transportation); Homemaking (shopping, errands, house cleaning, laundry, household paperwork and bill paying); Companionship (conversation, stimulation, entertainment); Psychological (counseling to address role changes, depression, developing new goals).

You and your family members should identify the needs together and discuss how they can be met.

Personal Care Attendant (PCA)
A PCA does bathing, dressing, grooming, toileting, feeding, preparing meals, and does housework, laundry, household management and driving on a daily and long-term basis. In some states, Medicaid may pay for PCAs via independent living programs. Most people hire and pay for a PCA on their own.

Home Health Aide (HHA)
An aide provides limited personal care, light housework, laundry, and shopping. HHAs may be covered by Medicaid, Medicare, or private insurance, but rarely for routine care over a long period (which is referred to as maintenance care). The HHA is usually employed by a home-health agency and that works under agency's supervision.

Homemaker or Housekeeper
This person does housework, cooking, errands, laundry, shopping and similar chores. Homemakers do not usually provide any 'hands-on' or personal services, but they can be hired through a home-health agency as well as a domestic service agency or privately. Their services are rarely covered by any medical insurance, either public or private.

Professional services
These include nursing, physical therapy, occupational therapy, social work service, nutrition (meal planning, not meal preparation), and others. A doctor's prescription is necessary. Medicaid, Medicare and private insurance usually cover some or all professional services but frequently with restrictions regarding the number of visits and/or the needs to be covered.

Your chapter has a set of worksheets to help you and your family work through the issues involved in hiring help at home successfully. To ask for Assessing Your Needs, Creating a Job Description, and A Sample Employment Agreement, call 1-800-FIGHT-MS (1-800-344-4867) and select the option that will connect you directly to your local chapter.

ACCORDING TO THE LAW: To Make Your Wishes Stick,
You Need Complete Advance Directives

Every competent person has a legal right to make decisions about one's own medical care. This includes deciding whether to accept or refuse care. Unfortunately, illness may make it difficult or impossible to exercise that legal right. A person can become temporarily or permanently legally incompetent to make decisions.

A person in this circumstance does not lose the right to make a decision; rather one loses the legal ability to carry out personal wishes due to their legal incapacity to make decisions that reflect those wishes.

To make matters more difficult, should you become legally incompetent, health-care providers do not need to abide by your decisions if they conflict with the health-care providers' professional judgment.

The way to enforce your wishes about future medical-care decisions is to make them in advance and place them in a legally enforceable 'advance directive' document. Then, health-care providers can be directed by your wishes, whether they agree with them or not.

What is an advance directive?

It is a document in which a competent person states medical decisions for the future. Advance directive requirements vary greatly from state to state, and I would advise you to consult an attorney when creating your plan. Before you begin, you should understand that there are two types of advance directives available to you: 1) a living will containing written directives to health-care providers and 2) a health-care proxy or 'power-of-attorney for health-care decision-making', in which you designate a person who will be sympathetic to your desires in medical decision-making to act as your agent if you are incapacitated.

Many standard legal forms for advance directives contain only one of these two types. I advise people to have both.

Why have both?

A living will establishes certain treatment guidelines that are to be followed in the future. A health-care proxy doesn't establish guidelines directly. Instead, it appoints a trusted person to make decisions for you if you cannot make them for yourself.

Because it is almost impossible to predict all the circumstances that might arise during a future illness, it is difficult to create a complete living will. The health-care proxy preserves your right to self-determination.

But my family knows my wishes

If you become incapacitated and you don't have specific advance directives, your family members will generally be deemed the appropriate decision-makers. Most courts agree that family members are the appropriate decision-makers.

But, decisions made by family members who do not have an enforceable health-care proxy are not followed by health-care providers if the providers either question the good faith of the family member or strongly disagree with the medical decision.

If, however, the family member has been made your health-care proxy, health-care providers must treat those decisions as if you made them yourself. They will not be able to deviate from them just because they may happen to disagree. Thus proxies are critical devices, especially for anyone whose values differ from those of the health-care community.

A proxy is not a surrogate

An important distinction must be made between a proxy and a surrogate. A proxy, designated by advance directive, was directly appointed by the now-incapacitated person. A surrogate is legally appointed by someone else. Surrogates may be empowered by appointment by a court, or by a legal relationship, such as marriage or kinship, that automatically gives the right to make decisions. But a surrogate may not be able to enforce decisions.

Examples of this often arise in quality-of-life decisions. Quality-of-life decisions by health-care proxies are almost invariably followed. Quality-of-life decisions made by surrogates are often closely scrutinized by others to make sure they conform to the incapacitated person's wishes or best interests, as interpreted by a health-care professional.

Clearly, the best way to ensure that your personal wishes are not overridden is to draw up a complete set of legally enforceable advance directives, including both living will and health-care proxy documents.

The health-care proxy document can incorporate provisions of the living will, requiring the person you name to follow any directives stated in your living will. The living will document can also incorporate the health-care proxy, in which case the authority of your proxy would be limited by any conditions you have spelled out in your living will. But whether you have one legal document or two, be sure you have both living will and health-care proxy protections.