WHAT IS THE PROGRESSION OF M.S. ?



The perception is that everyone is different in progression.
Part of this confusion is the result of incomplete diagnosis.
Part is because some sub types of MS have not been discovered?

MULTIPLE SCLEROSIS WHAT TREATMENT APPROACHES ?

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Generally, individuals note the first signs between the ages of 15 and 50. It is very rare to have onset of MS before age 15 and after age 60.  Most people with MS learn of their disease between the ages of 20 and 40.  The mean age of onset is 29-33 years.  Only 3-5% of Ms occurs in childhood.  Some suggest only 2-5% are diagnosed before their 18th birthday.  84% of patients are R/R Ms with 64% having complete recovery.  Those who contract the disease in teen years are usually slow progression type.

Perception of the disease to diagnosis is usually 4-10 years.  Most common is 3-4 years after first symptoms.  Some believe that the blood/brain barrier is disrupted at the onset of the symptoms.  About 1/3 of diagnosed MS cases show no deficit from the disease, according to the Mayo Clinic.

It can take 15-20 years for Ms to become disabling and research suggests a drug prevents progression after a 2-3 year study is clearly wanting.

It is unpredictable because its course can be relatively benign, somewhat disabling, or devastating. It is crippling because communication between the brain and other parts of the body is disrupted, at worst leaving the person unable to speak, walk, or write.

About 59% of patients within 10 years after Dx'ing (diagnosis) are unable to carryout household and employment responsibilities. (Sept 99)

The most frequent affected sites are the optic nerves, brainstem, cerebellum and spinal cord.

Symptoms may be mild or severe, of long duration or short, and may appear in various combinations, depending on the area of the nervous system affected. The initial symptom is often blurred or double vision, even blindness. Nearly all MS patients at some time experience numbness and muscle weakness in their extremities, and difficulty with coordination and balance. These symptoms may be severe enough to impair walking or even standing. Speech impediments, fatigue, tremors, and dizziness are other common complaints. As the disease progresses, sexual dysfunction may become a problem. Bowel and bladder control may also be lost. Some patients experience memory impairment and depression.  Spasticity especially in the legs is a symptom.

The main disease processes in MS are breaches in the blood-brain barrier and the passage of activated and inactivated immune cells into the CNS. These cells initiate a variety of immune reactions that eventually destroy the myelin wraps on nerve axons.  Myelin loss results in various physical disabilities that increase with progressive destruction of myelin.

About 43-65% has some cognitive & perceptual problems with MS that appear to be linked to the extent of lesions on the brain.  These include short-term memory loss, abstract thinking, conceptual reasoning, and some have language problems.  Lesions and scaring of the corpus callosum (bridge that connects the left & right hemisphere of the brain).  This results in reduced speed and accuracy of problem solving.

BROAD STAGES OF MS

For the purposes of classifying the symptoms of MS and for tracking the progress of the disease, MS patients fall into the following groups defined as primary, secondary, and tertiary symptoms.

Primary symptoms are those symptoms caused by the demyelination of the fatty nerve sheath (the myelin) that protects the nerve fibers of the central nervous system. These symptoms appear as weakness, numbness, pain, vision loss, bladder and bowel dysfunction, paralysis, tremor, and loss of balance. These symptoms are caused by nerve transmission or conduction problems in various organs and/or muscles.

Secondary symptoms are simply evolved symptoms that have resulted from primary symptoms, such as repeated urinary tract infections can be the result of bladder dysfunction. Physical atrophies (but not demyelination) may occur because of "disuse weaknesses," including decreased bone density, muscle imbalances, shallow breathing, and posture or alignment problems. In severe cases, problems such as bedsores could be the result of MS paralysis.

Tertiary symptoms are classified as the psychological, social, and vocational problems associated with either the primary or secondary symptoms above. Many with MS may not drive a car, operate heavy equipment (as an occupation), use a computer, or even walk. These limitations can have a profound psychological effect on people with MS.

FREQUENCY OF ATTACKS In the early stages it is usually 1-3 times a year. In the middle stages one attack every 3 years. The longest duration between attacks is 17 years. Some have one attack and never have another one. Most doctors don't even like to speculate on frequency of attacks because it is so variable.  Some patients have been known to go 20 to 30 years without a significant Ms attack.  It is noteworthy that many of these latent progressives have never taken drugs that claim to slow Ms progression.

75% of those with MS never need a wheelchair

2/3 of patients remain functional after 20 years of being diagnosed

PROGRESSION RULES

Many physicians are reluctant to predict the course of MS because the disease can vary widely from one person to another.  There are 8 known types used in research but most neurologists only use 4 types if any.  Many neurologists predict the course of the disease using a "five-year rule" based on the medical evidence of the patient. Symptoms can be predicted using the five-year rule, which will help determine the likely condition of the patient in 10 or 15 years.  If your doctor attempts to predict progression be thankful he tries as the predictability is extremely difficult if not impossible.  DON'T hold his feet to the fire.  We have always wanted to know for planning reasons.  I took early retirement so we could travel while we still could.  I prepared wills, discussed future medical options, prepared a contingent enduring power of attorney, before cognitive impairment made this impossible.  If your doctor is reluctant to discuss progression apply my rule, "Plan for the worst, Hope for the best and live each day to the Full".

According to the National Multiple Sclerosis Society, the disease of MS usually takes one of the following four courses:

* A benign sensory course of MS when attacks are limited to sensory symptoms or optical neuritis (ON)
* A relapsing-remitting course (1) that is characterized by total recovery after MS attacks, or flares
* A relapsing-remitting course (2) that becomes progressive as recovery from attacks is only partial (also known as secondary progressive MS)
* A primary progressive course that is progressive from the first onset of symptoms 

The measure of progression is normally ranked on the expanded disability scale as follows:

0 –       Normal Neurological exam
1.0 – 1.5 – No disability
2.0 – 2.5 – Minimal disability
3.0 – 3.5 – Mild to moderate disability
4.0 – 4.5 – Severe disability, but still able to work 12 hours per day
5.0 – 5.5 – Increased limitation in walking ability, can walk 500 meters but likely can’t work
6.0 – 6.5 – Need for walking assistance
7.0 – 7.5 – Restriction to wheelchair, but able to wheel self, transfer without assistance
8.0 – 8.5 – Restriction to bed or wheelchair; self care with help, has use of arms
9.0 – 9.5 – Helpless bed patient
10.0 -          Death due to MS, results from respiratory paralysis, coma of uncertain origin, or following repeated or prolonged epileptic seizures.

If untreated, RRMS can have a highly variable course in terms of disabilities although an average rate of decline of one EDDS (a scale for assessing disability state) level every six years has been documented (Swank and Dugan, 1987; Sibley, 1992).

Most common initial symptoms:
Difficulty in walking, fatigue.
Abnormal sensations such as numbness or pins & needles.
Pain or loss of vision due to optic neuritis, inflammation of the optic nerve.
Blatter control and Urinary tract infection

Some studies have shown that the degree of disability present at five years after the onset of symptoms is a good predictor of disability at 10 or 15 years after onset, and many neurologists use this "five year" rule in predicting a person's course.  Other studies suggest that sensory problems (e.g., loss of feeling on the skin's surface, "pins and needles," or increased sensitivity to pain) are associated with a good prognosis, that is, a relatively benign course. Early onset of cerebella findings, (e.g., tremor, coordination problems and slurred speech) tend to be linked to a more progressive disease course.
MS tends to take one of four clinical courses. Some people have the benign sensory form, where attacks are characterized by sensory symptoms and/or optic neuritis. These individuals  generally do not have severe long-term disability.
Many people with MS have a relapsing/remitting course characterized by periodic, unpredictable exacerbations where existing symptoms worsen or new symptoms appear. Remission from such flare-ups may be complete or partial. When remission is partial, the course may be referred to as relapsing/remitting turned progressive.  Such individuals sometimes develop a progressive form.
A minority of people with MS have a severe, progressive form of the disease from onset, where symptoms generally do not remit,  but tend to be progressive from the onset.
Research is currently going on to try and identify more precise prognostic indicators of disease activity.

Symptoms     The most prominent symptoms throughout the entire course of the disease are:

91% Increase in reflexes actually a slowing down of reflexes to us lay people.  Walking difficulties, stiffness.  General symptoms such as dizziness and vertigo are common symptoms of MS, and these may include the more specific symptoms of feeling off balance, falling, or lightheadedness. Such symptoms are due to lesions or scarred areas in the pathways responsible for visual, spatial, and auditory signals reaching the brain and maintaining equilibrium. Vertigo or a sensation of spinning is much less common.

92% Heat fatigue MS patients report increased fatigue at warmer environmental temperatures, they have a heightened sensitivity to increase in core temperatures.  Overheating or hyperthermic stress, causes a worsening of existing Ms symptoms, development of new symptoms, and general lassitude and increased fatigue. The development of new symptoms is usually cause by heat as a result of a disease.  Even one degree F can cause a flaring of MS symptoms, practically no other neurological disease reacts this way.  Specific symptoms related to heat sensitivity include decreased visual acuity, decreased strength, difficulties with speech, mobility, balance, bladder and bowel control, and cognition.  However  about 7% love heat and can't tolerate cold.

85% Ataxia--(incoordination) Difficulties in controlling the strength and precision of movements, so that holding things is a problem; balance and coordination may be impaired. Positional vertigo is also a symptom of MS.

77% Weakness (fatigue) with spasticity difficulty with walking or gait, weakness, pain, numbness, and "spasticity" (muscle tightness that can interfere with normal voluntary or involuntary muscular control). 

75% Tremor (dysmetria & other ataxic features)  Usually in head, neck, vocal cords, trunk and limbs.  Tremor or uncontrollable shaking is one of the most obvious MS symptoms because it is seen so readily. Tremor in MS patients is termed "intention tremor" (the most common), when a patient exhibits no shaking while at rest; postural tremor, when a limb may shake while sitting or standing, but not while lying down; and nystagmus, which is tremor associated with jumpy eye movements. Tremor is an outward symptom of MS that can cause a patient to become embarrassed and depressed.

75% Sensory loss Numbness, tingling and sensitivity to heat or cold.

63% SEXUAL DISFUNCTION Sexual functional impairment is also common in MS patients, with symptoms ranging from loss of libido and sexual sensation to a difficulty or inability to ejaculate.   

55% Vision Problems  Double vision, Diplopia or Optic neurtis in MS is usually an impairment of the nerves to the eye or the eye muscles themselves.  Some group all vision problems as the most common--Ranging from blurred vision to more serious visual impairment, often a symptom which disappears later. Crossed eyes or strabismus can also be a symptom of MS.  Blindness in MS is rare.  Optic neuritis (also known as retrobulbar neuritis), an inflammation of the optic nerve, is found in 55% of persons with MS and often is the first symptom of MS. Approximately 50-60% of people who have an inflammation of the optic nerve eventually develop MS.  Vision problems usually clear up by its self without the need for medication, if caused by Ms.  However other things can cause Optic neuritis which could have longer term implications, so a visit to your doc is imperative.

50% Depression effects about 50 percentage of Ms parients

50% Cognative Impairment.  Cognitive dysfunction occurs in about half of patients with MS. Fortunately, only about 10% of MS patients develop cognitive dysfunction severe enough to significantly impact daily life. Family members of MS patients are usually the first to notice changes in personality or changes in their daily routine. Cognitive dysfunction can range from not being able to find the right word in conversation to impaired reasoning ability. Measuring cognitive dysfunction requires specially trained medical professionals known as neuropsychologists. Neuropsychologists conduct a series of tests to determine the level of cognitive dysfunction present and the strengths still retained by the MS patient.  Cognitive Impairment usually begins with some short term memory loss.  If you are one of the unlucky 10%, you are advised to prepare a "Contingent Enduring Power of Attorney" so that your wishes are carried out by someone you trust.  This must be done before you lose your reasoning ability.   Ms lose cognitive ability after repeated testing where as non Ms improve cognitive ability after repeated testing.  59 in test Oct 2000.  

45% Bladder difficulty Control problems and urinary tract infections.   Research suggests the best and most effective method of bladder control is self-catheterization,  94% have no complications with this method.  Others suggest bladder dysfunction occurs in more than 80% of MS patients who can effectively manage their disease by using medications, diet, or mechanical help such as catheters. Bladder dysfunction occurs when the sphincter of muscles controlling the bladder does not receive a proper signal due to the demyelination of the nerve pathway, resulting in bladder incontinence. (Demyelination is the loss of the myelin sheath of a nerve or nerves.) A similar condition occurs with MS patients who have bowel dysfunction.  I have found that an indwelling catheter is a God send to manage this problem.

33% Slurred or scanning speech Tremor  Dysphagia (difficulty swallowing).  

30% Headache, one third of MS patients report a history of migraine

Smell: 10 to 20% of MS people have impaired sense of smell.

Depression is one of the most common symptoms of MS. Depression in MS patients is commonly a reactive symptom of MS--the result of the imagined impact of MS on the patient's life. MS depression episodes may exhibit sadness; changes in appetite or sleep; feelings of guilt, hopelessness, or worthlessness; violence and/or outbursts of rage; and thoughts of death or suicide.  Drugs usually increase depression.  The first three years after being diagnosed are the most critical.  This is the time to seek help from those who understand this the most difficult stage of Ms.  Talking is the very best therapy.  Seek out relatives, friends, neighbors, MS societies, Multiple sclerosis chat rooms.

Mood Swings--Ranging from depression to euphoria.

Fatigue--Mild to severe fatigue and weakness.

PHYSICAL EXERTION brings on fatigue but it also aggravates old MS symptoms and can bring on new MS symptoms.

Cognitive Problems

Most people with MS do not show any evidence of intellectual deficits. However, it is estimated that about 40 percent of people with MS have mild cognitive dysfunction and another 10 percent have moderate to severe cognitive impairment.

The cognitive profile of a person with MS may not be easy for a neuropsychologist to determine despite using standardized and validated assessment tools. Among those individuals affected by cognitive impairment, the most common problems include:

Memory recall, particularly remembering recent events. Glucocorticoids can cause short term memory loss.

Slowness in learning and processing new information.

Difficulty with abstract reasoning, such as analyzing a situation, planning a course of action, and following through.

Poor judgment.

Impaired verbal fluency, such as slowed speech or difficulty coming up with a word during conversation.

Cognitive problems associated with MS are not related to a person's level of physical disability and can potentially affect people with few physical symptoms of MS. In addition, cognitive problems can develop rapidly during an exacerbation of the disease. In these cases, the cognitive deficits can improve as the person comes to a remission. It is important to stress that cognitive impairment in MS bears little resemblance to the intellectual decline in Alzheimer's disease. People with MS virtually never experience severe, progressive cognitive decline. Cognitive impairment in MS is typically mild and may stabilize at any time.  My wife however has experienced severe, progressive cognitive decline.  This syndrome was arrested by taking 1,200 mg of lecithin each day.  It appears to have reversed her cognitive impairment to a 4 year previous status.  It is too early to determine if her cognitive impairment progression has been stopped.  It does not appear to effect physical impairment but does elevate the blood sugars.
 
Individuals with MS and their families should be aware of potential cognitive problems. Recognizing and learning about certain deficits can dispel misunderstandings about a person's apparent forgetfulness, carelessness, or seeming indifference.  Families can be supportive and help the person compensate.  Understanding deficits can alleviate fears about losing one's capacities. If cognitive impairment is suspected, this topic should be discussed with the person's doctor. In some cases, depression or medications can mimic cognitive problems. These can be treated separately. A neurologist can perform a brief evaluation to test for pronounced (severe) cognitive deficits. However, a neuropsychologist (preferably one with experience with MS) may  be recommended to perform a more complete evaluation to test for subtle cognitive changes. If deficits are found, the neuropsychologist can follow up to help individuals and their families cope with cognitive problems and to work on cognitive rehabilitation.

There are a number of compensatory strategies individuals can use to cope with mild cognitive problems. These include memory aides such as writing down all appointments, making check lists, or using memory "tricks" (e.g., visual images or rhymes) to help remember. Practicing concentration and focus when listening will also minimize distractions and help the person retain new information.

The brain can show relapsing and remitting lesions by MRI scans without causing clinical symptoms.  Clinical symptoms can be evident without MRI lesion markers.

Suicide risk factors
 Highest risk is within 5 years of Dx (diagnosis), it is the fear of deteration rather than the deteration itself that is the root cause.
 Women are 65% more likely to suicide than non-Ms women
 Men are at highest risk when Dx 35-39 years during their period of self doubt.
 Hospital vs. home care increases the risk of suicide by three times.

MS death stats (Denmark 1949-1993 for 8,142 cases)
55% - attributed to MS
17% - cardior vascular disease
8 %  - cancer
5%   - respiratory infection
9%  - other natural causes
4%  - suicide

L'HERMITTES an electric type shock like symptoms resulting from repositioning the head.  It is associated with any lasion in the cervical spine but it is not necessarily associated with Ms.  Could be transverse myelitus, CFS - somatization.  Cause is really unknown.

TRIGEMINAL NEURALGIA

1-2 % of Ms have TN but there are a number of other causes.  Trigeminal Neuralgia (TN), also known as tic douloureux, is an acute, piercing, electric shock-like pain in those regions of the face served by the Trigeminal (5th) Cranial Nerve (CN V).  The forehead and eye, the cheek and jaw.  Episodes of TN can last anything from a few seconds to a few minutes or very occasionally longer and can be triggered by a number of factors including laughing, chewing, brushing the teeth, talking, wind on the face or even touching the face.  It most commonly occurs in people over age 50 and is rarely seen prior to age 30.  If TN occurs in a younger patient, it almost always is associated with Ms.  In Ms, myelin is destroyed faster than it can be regenerated.  Some believe Ms is caused by the destruction of myelin regeneration cells likely triggered by the enzyme (cPLA2) or one of the epigenetic markers.  Currently 02/17/04 there is no cure for Ms and no effective treatments have been able to halt its process.  Some people with TN have responded favorably to acupuncture, chiropractic adjustment, self-hypnosis, exercising, medications and microsurgical methods.

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