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Multiple Sclerosis -
A Guide For Patients & Their Families




 
Symptom Frequency Of Multiple Sclerosis
      ________________________________________ Symptom Incidence ________________________________________ Balance Abnormalities 78% Impaired Sensation 71% Fatigue 65% Paraparesis 62% Urinary Disturbance 62% Sexual Disturbance 60% Visual Loss In One Eye 55% Weakness Of One Limb 52% Incoordination Of Limbs 45% Double Vision 43% Abnormal Sensory Experiences 40% Pain 25% Facial Paralysis 15% Epilepsy 5% Hearing Loss 4% Facial Pain (Tic Douloureux) 2% ________________________________________



Signs & Symptoms Of MS

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The signs and symptoms of MS can be called Primary, Secondary, or Tertiary.

Primary symptoms are the result of an area of DeMyelination, also called plaque, and include symptoms such as Weakness, Numbness, Urinary Incontinence, Visual Disturbance, and Fatigue.

Secondary symptoms are complications that result from the Primary ones, including Urinary Bladder Infection and Pressure Sores.

Tertiary symptoms include the Emotional, Social, and Vocational impact of the disease on the patient, family, and community.


Primary Symptoms

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MS is largely a disorder of Walking (Gait) and Bowel and Bladder (Sphincter) function. Plaques can arise in any part of the Brain or Spinal Cord that is the CNS.

Because a lot of Myelin or White Matter is needed for the control of Gait and Sphincter function, symptoms referrable to these are the most frequent.

Abnormal Gait may result from weakness of the legs, stiffness (Spasticity), Imbalance, or any combination of these. Spasticity and Weakness frequently result when the Spinal Cord is involved.

An early symptom of Spasticity is stiffness of the legs, described as "Heaviness", "Dragging", or "Easily Fatigued." Patients may say that it is difficult to walk over rough surfaces such as carpets and unpaved roads, and walkways.

In the earliest phases of Spasticity, some patients say that they cannot walk quickly or run. There is increased difficulty in climbing stairs and dealing with roadside curbs.

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With Spasticity, the patient often notices shaking or jerking of the leg when the toe is placed on the floor and the knee is slightly bent. This sign of Spasticity is called Clonus.

If the arms are weak or Spastic patients complain that they have problems doing anything requiring fine finger movements. Doing up buttons, tying shoelaces, and writing may be particularly difficult.


Problems with Coordination and Balance may be very disabling. Ataxia is a frequent symptom characterized by the patient's inability to balance while walking. This necessitates walking with the feet spread more widely apart than normal, improving the center of gravity.

Plaques in any part of the Brain known as the Cerebellum are usually responsible. Tremor of the limbs and of the head or trunk are also signs that the Cerebellum is affected.

With hand Tremor, the patient often notes that this symptom is worse when they attempt to exercise precise control of the fingers (Intention Tremor). This frustrating experience may make writing, eating, and dressing nearly impossible.

Other Cerebellar Signs include Incoordination of Speech and disturbance of Eye Movement. Many people with Cerebellar plaques may Speak Indistinctly, as if drunk, or exhibit Nystagmus, oscillations of Eye Movement in certain positions.

This is usually only noticed by the physican during examination. However, some types of Nystagmus give rise to symptoms: objects may seem to Shimmer or Jump when the patient tries to focus on them, a condition called Oscillopsia.

Complaints of abnormal sensation like "Tingling", "Pins and Needles" or "Tight Bands" are very common.

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Some patients have painful sensations, which can be either aching or sharp and shooting. These Sensory problems can occcur in any part of the body and are most frequent in the legs and trunk.

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Impairment of intellect is uncommon in MS but may be seen in patients who have advanced disease. Contrary to popular opinion, inappropriate Elation or Euphoria is much less common than Depression.

The majority of patients complain of abnormal Fatigability. It is a major problem in a third of all patients, who describe it as a "Washed-Out," Exhausted, or Lacking In Energy Sensation, usually worse in the mid to late afternoon.

The cause of this is unknown, but since it seems to worsen with warm and humid weather, it may be secondary to changes in Body Temperature. Normally , body temperature is highest in the late afternoon and lowest early in the morning.

Dizziness or Vertigo is often reported, a symptom in which there may be a sensation of spinning or turning sometimes associated with Nausea or Vomiting. Such a symptom is usually short-lived.


Possible Courses Of MS

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MS tends to have four basic patterns:
1 - The Benign type is seen in at least 20% of patients. These patients have few attacks and complete or nearly complete remissions.

Their symptoms tend to be primarily Sensory or Visual. Such persons experience no restrictons in their daily activities and remain fully employed.

2 - The Relapsing/Remitting type is smilar to the Benign course except that exacerbations may include episodes of Weakness, Imbalance, or Disturbed Bladder Function, to name a few.

Like the Benign type, there tends to be complete or nearly complete recovery between attacks. After many years of illness, these patients have only mild restrictions, if any, on daily activities. They account for about 25% of patients.

3 - The Relapsing/Progressive type is also characterized by clearcut attacks, but recovery from such episodes is incomplete.

These persons may eventually have moderate to severe disability, with significant restrictions in their daily activities. About 40% of patients are in this catergory.

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4 - The Progressive type never experience clearcut exacerbations but who instead have slowly Progressive disease in which remissions do not occur.

In some of these patients, severe disability may be present after only a few years of illness. Only about 15% of patients are in this category.


Outcome

Although it is impossible to predict accurately the course a patient will follow, some symptoms seem to be of predicitive value. Early Onset of illness, before the age of 35, tends to have a better prognosis than later onset of the disease.

Acute onset of symptoms over days is a much more favorable sign than is gradual onset of symptoms over weeks or months. Complete remission from the initial attack is also characteristically a much more favorable sign.

When symptoms are primarily of a Sensory type, including Numbness, Tingling or Tightness, or Optic Neuritis (ON), outcome is generally favorable.

Early onset of Weakness, Spasticity, or Incoordination, especially affecting Gait, is generally a Poor Prognostic Sign. After the first five years, one can better prdict what course the patient will have.

However, a previously Benign type or the Relapsing/Remitting type may evolve into a Relapsing/Progressive or slowly Progressive type.

Once a type has become Progressive, reversion to a Remitting one is not likely to occur.

There has been much speculation over the years as to what causes a new attack. The most frequent factors cited by patients and families are Emotional Stress and Psychological Trauma.

It is difficult to prove or disprove the role of emotions in the precipitation of attacks or in progression. The sudden appearance of new symptoms may itself cause that emotional distress. To date, studies of this question have revealed only conflicting results.


Drug Therapy

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The goals of therapy of any disease are:
1 - To prevent the initial occurrence of the disease (Prophylactic Treatment);

2 - To arrest the progress of the disease and prevent future attacks (Curative Treatment);

3 - To repair the damaged tissues and restore normal function (Restorative Treatment);

4 - To treat symptoms and prevent and relieve complications (Symptomatic Treatment);

5 - To help the patient adjust to the disability and achieve as much function as possible with the remaining normal tissues or parts (Rehabilitative Treatment).


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The cause of MS is not known. Moreover, one can only conjecture about the mechanism of tissue damage that produces the impairment.

Finally, it is the nature of the tissues of the CNS to regenerate poorly, if at all, after severe damage. Considering these factors, the treatment of MS is very frustrating and disappointing.

At present there is little or probably no treatment that will prevent the initial or future attacks of MS. There is nothing available for MS because no Virus or other infectious agent has been identified.

There are no known curative therapies that will arrest the course of MS or even alter the natural history of attacks and remissions or halt progression.

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Many symptoms and signs do clear partially, or even completely, following an attack. It is believed that these partial or complete remissions are caused by the clearing of inflammation and Edema in the acute lesions.

In large and more severe lesions, the Myelin at the center of the lesion, or plaque, may be severely damaged, and so only partial or possibly no remission occurs.

Subsequently with attacks, the lesions, or plaques, enlarge, and the deficit increases, which explains why early in the course of MS many treatments are effective and later most are ineffective.

Once there is large plaque or lesion in the central Myelin with Sclerosis (Scarring), one must hope that there is some treatment that will restore or repair the damaged area.

Unfortunately, at present there is no restorative therapy that will repair the damage or improve Conduction in the region of the plaque.

Today symptomatic and rehabilitative therapy are the most effective approaches available. One may use drugs effectively to relieve certain symptoms (such as Spasticity or Pain) that are a direct result of the plaques (Lesions) in the Myelin of the CNS.

Symptoms such as Weakness, Spasticity,Incoordination, Pain, Numbness, Urinary urgency, Incontinence, Retention, Blurred Vision, and others are "Primary Symptoms" that are related to plaques in specific locations.

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The patient should be managed when necessary by a team of health professionals consisting of Neurologists, Physiatrist, Psychiatrist, Urologist, Internist, Nurses, Physical Therapist, Occupational Therapy, Social Worker, Rehabilitation Counselors, and Psychologists.

Few diseases have as many varied long-term ramifications, and few require the services of so many professionals at some time or other during their course.

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The Major Primary Symptoms of MS are Motor Disabilities (Weakness, Stiffness, or Spasticity, Incoordination, Loss of Balance, Gait Difficulties, and Tremor).

Weakness and other motor symptoms, if seen as part of an acute attack, may respond to short-term AntiInflammatory agents such as ACTH (AdrenoCorticoTropic Hormone Or Corticotropin), Adrenal CorticoSteroids, and Synthetic GlucoCorticoids (Prednisone).

These drugs are administered for brief periods, almost never more than a month. The drug may be taken again for brief periods if there is a recurrence or a new attack, but the effect is often less in each subsequent bout.

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Spasticity is a motor symptom that can be disabling and painful. It may cause Difficulty In Walking, restrict the Range Of Motion of the extremities, and result in Painful Muscle Spasms.

Three drugs have been recommended for controlling Spasticity: Baclofen (Lioresal), Diazepam (Valium), and Dantrolene Sodium (Dantrium).

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Tremor, Loss of Coordination, Ataxia, and Loss of Balance with Gait difficulties are troublesome and disabling symptoms and unfortunately are resistant to any known drugs.

Speech Disorders, such as Slurring, Scanning, or Unintelligible Speech, another motor symptom, do not respond to any available drug.

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Amitriptyline (Elavil) has been shown to be effective in some patients who have "Emotional Incontinence" or Uncontrollable InAppropriate Laughing or Crying.

Amantidine (Symmetrel) has been reported to be effective in alleviating Fatigue in some patients.

Certain drugs control muscle contractions of the Urinary Bladder is important when the patient complaints of Primary Urinary Symptoms (Urgency, Freuency, Incontinence, and Urinary Retention).

All have the common side effects of: Dryness of the Mouth, Constipation, Drowsiness, Photophobia (Sensitivity to light), and Blurred Vision. Sometimes it is necessary to accept these side effects in order to achieve the benefits for the Bladder.

Intellectual Changes

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It is difficult to state with any certainty the frequency, nature, and severity of intellectual changes in MS. Modern estimates of such changes range from 25% to 65% of all MSers.

Given current evidence, it is quite likely that approximately 45% to 55% of MSers have some intellectual deficits that can be measured using specialized Psychological tests.

The prevailing view is that most such changes are subtle. A small number, perhaps only 5 to 10% of all patients, have changes severe enough to limit their everyday functioning.

Since DeMyelination can occur in any of the Brain's many areas of White Matter, a variety of functions may be affected.

Although there is incomplete agreement concerning the specific abilities affected, the ones most frequently cited are Memory for Recent Events, Abstract Reasoning, Verbal Fluency, JudGement, and most Spatial and Motor Abilities.


Conclusion

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Adjusting to MS means adjusting to an illness with many faces. Some of these faces are easier to deal with than others. Adjustment begins with the need to resolve the uncertainty produced by the first appearance of symptoms.

Once a diagnosis is made, acceptance of the reality of having MS and all it implies can take place.

Adaptation follows as the MSer grieves for what has been lost and builds a new and different way of life. Once adaptation has occurred, MS may fade into the background a bit as the MSer carries on the busines of living.

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The process of adjustment is affected by an individual's own coping ability, by aspects of the enviroment, and by characteristics of the disease. No two people adjust in the same way or at the same pace.

Nevertheless, adjustment can be very successful, and the quality of life can remain quite good in spite of the tremendous challenges presented by MS.

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