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  2. 2. Author Information Diana Castillo, BA, MSSW, LCSW is an Independent Clinical Social Worker currently Licensed in Florida, Reiki Master. She herself has had Multiple Sclerosis for at least 13 years, possibly over 20, and is an expert in the disease process, the losses and implications in the lives of victims and all that is involved in helping the Multiple Sclerosis victims tolerate their losses and the changes in their lives and bodies. The author herself has no visible disability at this time but does have internal processes that are challenging and is well aware of the necessary personal mental attitude and physical respect of her body required to stay as healthy as possible. She has also treated the concomitant disorders that victims must learn to deal with. Those include Depression, Anxiety, Grief and Loss as well as the physical and medical complications that beleaguer the lives of the victims, such as episodes of blindness, muscle weakness sometimes causing inability to walk or use their hands, pain, vertigo, slurred speech, strokes, seizures, cognitive changes and much more. She has worked as a Psychotherapist in a Community Mental Health Clinic setting, Private Psychiatric Hospitals and Independent Clinical Practice for over 20 years. She is also a Holistic practitioner and has integrated the traditional and the holistic approaches to health and healing using Alternative modalities with Traditional modalities. She is also completing her dual Doctorate in Natural Healing and Nutrition from the Clayton School. 2
  3. 3. Course Summary This course will provide the professional with the knowledge for understanding and treating Multiple Sclerosis victims. This course will include the definition of Multiple Sclerosis, the statistics, symptoms, diagnosis, and types of the disease, treatments, prognosis, future of treatments for Multiple Sclerosis and literature and support groups available. The course material has been collected from current literature, personal account and experience with the disease, and time proven literature and materials. 3
  4. 4. Course Objectives After completion of this course the professional will be able to: 1. Define Multiple Sclerosis 2. Discuss the prevalence of Multiple Sclerosis 3. Discuss the symptoms of the disease 4. Discuss the diagnostic criteria for the disease 5. Learn the types of the disease. 6. Understand the course of the disease. 7. Learn the current treatments of the disease including the pros and cons of each 8. Discuss the prognosis and course of the disease. 9. Understand the role of the professional in the treatment of the victims of the disease. 10. Peruse the literature and support systems available for the victims of the disease. 11. . Look at the future directions for treatments for Multiple Sclerosis 4
  5. 5. Outline 1. What is Multiple Sclerosis 2. Statistical prevalence of Multiple Sclerosis and other data 3. Causes of Multiple Sclerosis 4. Diagnosis of Multiple Sclerosis 5. Symptoms of Multiple Sclerosis 6. Types of Multiple Sclerosis 7. Courses of the disease 8. Current treatments of Multiple Sclerosis 9. Pros and Cons of the treatments for Multiple Sclerosis 10. Professional’s Role in the treatment or management the disease with the victims of Multiple Sclerosis 11. Available Literature and Support Systems for victims of Multiple Sclerosis 12. The Future of treatments for Multiple Sclerosis. 5
  6. 6. PART 1: What is Multiple Sclerosis? Multiple sclerosis is an autoimmune disease affecting the nervous system, which consists of the brain and the spinal cord. Autoimmune diseases are, in simple lay terms, those diseases in which the body fails to recognize normal cells and begins to attack the normal cells as if they are enemy cells. The cells targeted are the ones in the central nervous system, which is comprised of the brain and the spinal cord. The brain being the central computer of the body and orchestrater of all bodily functions and actions cannot perform as intended when it develops scar tissue, lesions and damage. Disability or symptoms follow the damage. For each person the course is different and the disability is different and symptoms are recurrent with relapses and remissions, or they progress steadily to ultimate disability without remissions or both. More specifically, and in medical terms, in the autoimmune disease called Multiple Sclerosis, there are focal demyelinations, also called lesions, in the central nervous system including lymphocytic infiltration of the brain, and a variable but progressive course. When the disease is active, there is inflammation that is believed to cause damage caused by an abnormal response to the inflammation and infection. Blood factors can cause inflammation in the nervous system as can viruses and illnesses. Normally, cells and fluids are prevented from entering the nervous system by the blood-brain barrier. This is a barrier in the base of the brain consisting of endothelial cells causing a shield type structure. In addition, another type of cell protects the endothelial cells reinforcing this shield. This prevents 6
  7. 7. inflammation from entering the brain and spinal cord. In the Multiple Sclerosis victim, this blood-brain barrier is actually attacked by the White Blood Cells involved in fighting infection. Holes are subsequently formed in the blood-brain barrier. Then the inflammation enters the nervous system. After this happens, there is a signal to another type cell, the Macrophage, and this cell proceeds to attack and destroy tissue. This is the direct cause of the damage to the myelin sheath, or demyelination. Under electron microscope what are visible are chunks of myelin inside macrophage cells in plaques. Once the lymphocytes have been activated by an immune reaction, caused by an infection or inflammation, the monocytes, another cell type, causes the macrophages to spring into action. The macrophages stick to the blood vessels and there they begin to eat their way through the blood-brain barrier, and hence into the nervous system. It is not known for certain if this is the complete process but it is a big part of it. Demyelination involves the lining of the nerves. The nerves have a lining called the Myelin Sheath, the protective covering of the nerves or axons. This myelin is a fatty insulation substance. The white brain matter is also made up of myelin and is white due to the color of the fatty substance. When this myelin is not damaged the electrical impulses to and from the brain travel along the nerves to the intended target. When this myelin is damaged, the electrical impulses are blocked in different parts of the spinal cord, brain matter and nerves. When that happens, the nerves cannot effectively carry their electrical impulse and the Multiple Sclerosis victim will have symptoms such as numbness, weakness, and problems with balance or position of the body or limbs for example. It is obvious then that since the myelin 7
  8. 8. protects the nerve and facilitates conduction of the electrical impulse along the nerve to the intended target in order to carry out an action or response of a body part, damage to the myelin causes problems in movement. Electrical impulses from the brain or to the brain travel along these nerves. They respond to external stimulation such as temperature, pain and body position or vibrations and send signals to the brain to alert it and evoke a response and action when necessary. Nerves also carry electrical impulses sending information from the brain to the muscles in the body and limbs about the internal status of the body and organs. All of these functions and important messages then are compromised when there is damage to the myelin, or demyelination during a Multiple Sclerosis relapse. (Sheremata, 2006, pp. 1-15), (Polman, Thompson, Murray & Mc Donald, 2001, pp. 2-10), (Kraft & Catanzaro, 1996, 10-12) Damage, or demyelination, occurs to this sheath whenever there is a flare up, or inflammation of the central nervous system tissue, also called a relapse of the MS. The damage in the brain or spinal cord is called a lesion and the scars that remain are called plaques. These plaques, when small, may or may not show up on MRI scans (Magnetic Resonance Imaging). The MRI will be discussed more in the diagnosis section of this course. When plaques form in the brain or spinal cord, or even the optic nerve, which is part of the brain, some of the myelin sheath or covering is lost or damaged. When damage occurs then the electrical impulse does not travel along the nerve well and there is some resulting trouble with the signal reaching its intended body part. There might or might not be a visible or perceptible deficit in a body part or organ of the body when this happens, but after 8
  9. 9. many and repeated relapses there will be some noticeable deficit. In time a person can become totally incapacitated and bedridden, blind, unable to breathe or eat without mechanical assistance, etc. In other words, in the brain and spinal cord, there will be areas of hardened tissue and permanent damage. These are called lesions and are areas of scar tissue and damage to nerves that occurs when the inflammation causes a relapse, resulting in increased demylination of the myelin sheath of the nerves. These episodes, or relapses, typically subside within about a month and in early phase of the disease, can lead to complete recovery from this specific episode. However, with time the relapses can and usually do increase and continue to attack the nerves causing increased lesions until the nerve can no longer receive brain impulses and function, hence evidence of disability. (Burnfield, 2004, pp. 1-7), Kraft & Catanzaro, 1996, pp. 1-10), Polman, Thompson, Murray & McDonald, 2001, pp. 1-2), (Sheremata, 2006, pp. 1-10) Sometimes the inflammation and plaques can be stopped by intervention, and sometimes they are relentless and continue to total destruction of all the axons leading to total and permanent disability. 9
  10. 10. Part 11: Statistical prevalence of Multiple Sclerosis and Other Data Prevalence of diagnosed victims of Multiple Sclerosis in this country is 1 person in 700 or 300,000 Americans at this time, (NAID, 2006), 250,000 – 500,000 according to the Multiple Sclerosis Foundation. (NIH, 2004), (NWHIC) Out of the countries in this world we have the highest number of people with Multiple Sclerosis. (NAID, 2006) Worldwide Multiple Sclerosis affects 1.1 million people. This was as of 1/13/2005. (NAID Age of onset is usually under 30 years of age, however one in 5 are diagnosed after 45, and many before 20, even infants. (Sheremata, 2006, p. 13) Approximately 70% of Multiple Sclerosis victims are women. Most victims under the age of 30 are women. However, onset of Multiple Sclerosis after age 40 is slightly higher in men. (Sheremata, 2006, p. 15) Most Multiple Sclerosis victims are of European descent living in the USA, less common in African Americans, even less in Asian living in the USA. (Sheremata, 2006, p. 15) Multiple Sclerosis seems to be more common in the northern latitudes of Europe and North America. (Sheremata, 2006, p. 15) 10
  11. 11. Part III: Causes of Multiple Sclerosis The causes of Multiple Sclerosis are actually not known but while there is no known specific cause, there are some factors that seem to indicate some possible causes. For example, Multiple Sclerosis is more likely to affect people who live in the northern parts of the northern hemisphere and in the southern parts of the southern hemisphere evidencing possible environmental causes. Also, when a person from a low risk area moves to the high-risk area before age 15, they then have a greater risk of developing Multiple Sclerosis, but if they leave a high-risk area after the age of 15, they are less likely to develop Multiple Sclerosis. This then points to an environmental factor in the development of Multiple Sclerosis. As far as genetic causes, there seems to be a “faulty gene” factor in the development of Multiple Sclerosis, but a specific gene has not yet been identified. More women than men develop Multiple Sclerosis in a ratio of 2:1. This points to a possible hormonal factor relating to female hormones. There seems to be a hereditary factor since it has been seen to pass from parent to child, and seems to run in families suggesting susceptibility to inherit Multiple Sclerosis. 11
  12. 12. Northern Europeans are at a greater risk for developing Multiple Sclerosis than Africans or Asians suggesting differing genetic pattern susceptibility. No pureblooded Aboriginal Australian has ever been diagnosed with Multiple Sclerosis. (Burnfield, 2004, pp. 20-21) One quarter of the cases who have had some infectious disease (e.g.: viruses, measles, mumps, smallpox vaccine, distemper, T-cell leukemia and certain bacteria) followed by an acute demyelinating disease such as post infectious encephalomyelitis, end up with the diagnosis of Multiple Sclerosis. This is a theory to study further but there seems to be a correlation. Epstein Barr virus (EBV), which is a herpes virus, has recently gotten some attention for having a possible role in the diagnosis of Multiple Sclerosis. One third of Multiple Sclerosis victims have the EBV antibody. So far one theory is that the immune system reacting to a protein in the EBV virus may cross-react with brain protein and cause myelin damage. The jury is still out on this theory. A new virus is of interest to scientists in looking for causes of Multiple Sclerosis. This is the new family of viruses called the HSV-6, which is related to the HSV-1 (cold sore virus) and more closely related to the EBV virus. In addition, another family of viruses called HSV-7 shares 2/3 of their DNA with the EBV virus. This means that Cross-reactivity of the antibody to these viruses could be an explanation of the presence of the EBV antibody in Multiple Sclerosis victims. The HSV-6, HSV-7 and EBV can all infect the immune system cells (lymphocytes) and cause them to reproduce uncontrollably (immortalize them). But only the HSV-6 and 12
  13. 13. HSV-7 viruses can infect nervous system cells. The HSV-6 virus has been found in myelin cells of Multiple Sclerosis victims. This is still being studied as there seems to be some relationship here. Some researchers are studying Chlamydia pneumoniae (not the sexually transmitted organism) and Acinetobacter for possible role in Multiple Sclerosis. What is known is that there is a great deal of evidence that abnormal immune reactions to myelin proteins are detected in Multiple Sclerosis victims. The same is true for victims of other disorders as well. The background of this type research in these type findings is that inflammatory diseases of the brain and spinal cord (encephalomyelitis) after infections and immunizations especially from the rabies vaccine led to findings pointing to an allergic potential of certain central nervous system proteins. The myelin basic protein has been a focus because in non-human mammals it has shown to cause demyelinating disease. So strong is this finding that it only takes 10 millionths of a gram injected into a rat to produce a disease that looks and acts like Multiple Sclerosis. Many years ago it had been found that Multiple Sclerosis victims have cells that react to this protein which supports the research that there might be an antibody causing the allergy theory. Similarly scientists in Sweden have found the same results in spinal fluid cells of Multiple Sclerosis victims. One of the new drugs used to control Multiple Sclerosis symptoms and relapses was formed using the results of this research. This is Copaxone, which acts like a decoy in the brain redirecting the immune reactions from the myelin and to the decoy. 13
  14. 14. Recent research has used other nervous system proteins that have been shown to produce nervous system diseases resembling Multiple Sclerosis. A new protein seems to be of great interest at the time of this writing. This is myelin oligodendrocyte glycoprotein (MOG) which is found in minute amounts in the central nervous system and which in monkeys has produced a disease very much like Multiple Sclerosis. In fact, an antibody to this protein is present in the blood of Multiple Sclerosis victims, especially victims with progressive Multiple Sclerosis. What does this mean? According to this theory, as presented by Dr. Sheremata (Sheremata, 2006, pp. 57-58), this means that it is very possible that in some victims of Multiple Sclerosis, there may be an immune reaction to this protein. This could be a very important finding. This antibody might very well be a key player in Multiple Sclerosis. In summation, the theory is that children vaccinated for a virus infects children who are genetically predisposed to that virus, resulting in an immune reaction to the proteins of that virus. These proteins resemble myelin. This causes an antibody, which acts much as an allergic reaction, which causes the nervous system to attack the myelin. While the vaccine was intended to build this antibody, it was not intended to confuse the immune cells and cause them to attack similar protein cells but inadvertently may have done just that. (Sheremata, 2006, p. 58) Other factors have been discussed as possible causes or involved in Multiple Sclerosis. Among these are toxins such as mercury (also used in dental amalgam), lead, arsenic, antimony, hydrocarbons, poly-cholor-vinyls (PCV’s). These have not been identified as causes at this time. 14
  15. 15. Stress has always been a contributor to illness and exacerbation of existing illness. Although Multiple Sclerosis does not seem to be caused by stress, stress does seem to exacerbate it playing a role in relapses. Certainly stress seems to impact immune system health. Another factor discussed as having involvement in Multiple Sclerosis is physical trauma and accidents. Indeed they were shown to increase Multiple Sclerosis relapses or symptoms. Pregnancy is one such physical factor, as are infection, surgery, burns, and other traumas. The fact is, any trauma is associated with stress, either physical or emotional or both can correlate with relapses. Interestingly, even a tissue trauma, as is true for surgery, can cause relapse. (Burnfield, 2004, pp. 26- 27), (Kraft & Catanzaro, 1996, p. 3), (Sheremata, 2006, pp. 48-70) My own experience is that although I was afraid of having surgery for fear of a relapse of the Multiple Sclerosis, when I had to have three surgeries in a year period, a hysterectomy, a hernia repair and a seroma resolution, due to my fears, I did the following. I arranged with my surgeon to have me in an operating room that was “swept” to clear it of latex as I am allergic to latex and quite a few other chemicals. I was the first surgery patient of the day so that the chance of infection from operating room bacteria was reduced. I was in a private pre-op room, was with a friend, was calm and peaceful, sedated so that I was totally asleep before being taken to the operating room, which is not true for most surgery patients. I was put in a private post op room, and then brought to a private room for my stay. I had the chief anesthesiologist administer my anesthesia after en extensive interview with him two weeks prior to and then on the day before each of my 15
  16. 16. surgeries. I was premedicated with benedryl and prednisone and given a delodod pump after surgery for pain. The allergy precautions were IV pre and post surgery. Extra precautions were taken by all staff to prevent infection and unnecessary stress for me. I was given a diet that was suited to me and similar to my daily diet. I had friends visit that did Reiki healing (a Holistic Alternative Healing method) on me and I meditated. I had my wonderful healing meditation music to listen to and after three major surgeries within one year I left the hospital the next day or two days later, did not use the pain pump for more than a few hours after surgery. I woke quickly and easily after the surgeries, and was up and walking that night after each surgery. I did not have any relapses. My fears were quelled and my surgeries were successful and easy. I was happy to go home to my loving pets and be in my bed, with my own food and supplies. I healed from the three large incisions very quickly. I consider my surgeries a success and I am convinced it was due to having complete knowledge of my disease and how to minimize the potential for relapse and or major disability and further damage to my brain. Having as little stress as possible is paramount in having as much control over the factors that can cause relapse and symptoms. 16
  17. 17. Part IV: Diagnostic Criteria for Multiple Sclerosis Diagnosing Multiple Sclerosis is a daunting feat. There are no clear-cut definitive tests for the diagnosis; rather it is diagnosed by rule out of other conditions and several other factors. The disease is finally diagnosed after a picture of symptoms and events occur. It is one of the most difficult diseases to diagnosis and presents as many other diseases. Some of the Differential Diagnoses are vascular such as small strokes, metabolic disorders such as vitamin B deficiency or diabetes, disc herniations, nerve entrapment between muscles or bones (producing numbness, tingling, weakness), infections, tumors and collagen disease such as lupus, or amyotrophic lateral sclerosis (ALS) which is very serious very quickly and leads to complete and swift paralysis. Many things are going on in the body of Multiple Sclerosis victim long before there is enough clinical evidence to warrant the diagnosis. Before the diagnosis is rendered there may be years or symptoms that can be very fleeting and disappear before a doctor can detect it with testing. Many people are told they “might have multiple sclerosis”, “possibly” or “probably”. Many people are diagnosed as Hysterical, or Neurotic, Anxious or Depressed. In order to render a firm diagnosis there must be at least two areas of demyelination (sclerosis) in the central nervous system (brain or spinal cord). 17
  18. 18. Some of the tests to diagnose Multiple Sclerosis are old, and some are relatively new. The criteria have been set by a committee called the McDonald committee. The committee determined the criteria for diagnosis. These criteria are as follows: 1. Two or more lesions and attacks or events and clinical evidence such as test results. (Sheremata, 2006, p. 34) The criteria consist of lab and clinical tests. 2. Two or more attacks, one lesion and Cerebral Spinal Fluid (CSF) or MRI evidence consistent with Multiple Sclerosis or an additional attack in a different site. 3. One attack, two or more lesions and dissemination by MRI evidence or second clinical attack. 4. One mono-symptomatic attack, one lesion and dissemination by MRI or CSF evidence and two or more MRI lesions consistent with Multiple Sclerosis and dissemination by MRI evidence or second attack. 5. No attacks but progressive from the start, one lesion and CSF and dissemination by MRI evidence of three or more T2 brain lesions or two or more spinal cord lesions, or four to eight brain and one spinal cord lesions, or positive Visual Evoked Potential (VEP) and four to eight lesions or positive VEP and four brain lesions and one spinal cord lesions and dissemination by MRI evidence or continued progression for one year. (Sheremata, 2006, pp36-37) 18
  19. 19. Another test that is useful is a Spinal Tap, The fluid that surrounds the brain and spinal cord is called cerebrospinal fluid. A needle inserted into the base of the spine is called a Lumbar Puncture and it removes some of the spinal fluid for evaluation. This fluid will contain a particular chemical makeup in the Multiple Sclerosis victim. A third test that is used to diagnosis Multiple Sclerosis is a test to measure the response of the muscle to stimulation. A fourth is the test to measure nerve response to stimulation. Other tests measure brainstem activity and conduction of electrical impulses, visual field tests, inner ear and balance tests, inspection of the optic nerve and some other tests that can be helpful. Sometimes tests will be conducted at the time of diagnosis in order to get a baseline of the person’s degree of disability. During the course of the disease there will probably be repetitions of the tests to see if the disease has progressed or has become another type of Multiple Sclerosis. Monitoring the disease insures that the best care can be given and the person can be kept as functional as possible for as long as possible, or it can determine if the treatment being used is still beneficial or if another treatment should be used. (Burnfield, 2004, pp14-15), (Kraft & Catanzaro, 1996, pp. 7-8), (Sheremata, 2006, pp. 29-36) 19
  20. 20. PART V: Types and Courses of Multiple Sclerosis 1. Relapsing -Remitting is the most common type of Multiple Sclerosis. This type is characterized by one or more symptoms varying in frequency and severity with varying degrees of recovery. During the attack free times, the victim apparently has no progression of the disease. An attack is called an exacerbation. During an exacerbation, myelin is destroyed and there is inflammation and swelling along the myelin in the affected area and the never conduction may be slowed or blocked. If it is severe enough there is an identifiable symptom or deficit. For example, if it is on a nerve that sends impulses to the hand, the hand might become numb or weak. If the inflammation is severe enough and lasts long enough there may be temporary paralysis. Once the inflammation has subsided the nerve may regain myelin and the damage may heal fully or to a certain degree. There will be a great amount of damage before the damage is permanent. That means enough scar tissue has formed to prevent re-myelination of the nerve and conduction of the electrical impulses. What causes a relapse or inflammation is unpredictable and usually vague. Stress causing increase cortisol that drops rapidly after the stress is relieved, vaccines, infections, illness, extremes of temperature, weather changes, trauma, accidents, pregnancy, fevers, poor nutrition, over exertion, and any abuse of the body can cause a relapse. 20
  21. 21. What can cause remission? It is not known exactly how the Relapse-Remission truly happens so all that can be done is to follow a healthy process, take the medicines provided to reduce the inflammation and try and keep a positive attitude. Certainly eating healthy, and even eating organic foods to eliminate the toxins and preservatives found in most foods and eat these foods that still have nutrients in them will help. Gentle exercise, adequate amount of sleep, avoiding infectious diseases and infections, avoiding extremes of temperature and weather will help. (Kraft & Catanzaro, 1996, pp. 10-12) 2. The second form of Multiple Sclerosis is Primary Progressive. This form is when there are no relapses. The victim only has steadily progressing worsening of the disease. A small percentage of Multiple Sclerosis victims have this form. It progresses in a steady fashion leading to complete disability in a shorter amount of time than the next form. If the person has any attacks with recovery, then it is reclassified as Relapsing Progressive Multiple Sclerosis. 3. The third form of Multiple Sclerosis is Secondary Progressive Multiple Sclerosis. In this form the once Relapsing-Remitting form changes and where there was no progression between relapses there now is progression between the relapses. 4. A fourth form of Multiple Sclerosis is called Rapidly Progressive Multiple Sclerosis or Malignant Multiple Sclerosis. This small number of victims become disabled in a very short amount of time. These victims usually start the disease with three or more severe attacks the first year. They also posses two genes, HLA-B-7 and DR-2. Aggressive care is critical for them. The treatment used is 21
  22. 22. immunosuppressive therapy (Chemotherapy) with Cytoxan or Novantrone used to stabilize them. More than a quarter of these victims can improve quite a bit. A disease that needs to be ruled out, incidentally, is HIV as it can mimic this type of disease process. There are ethnic differences in the incidence of the progressive forms of the disease, about 10% more in the French, 30% in the Irish and increased in European Jews in Israel, the Spanish and Cubans in the US. (Sheremata, 2006, pp. 36-39) Seventy percent of the victims with Multiple Sclerosis start with Relapsing- Remitting. For many, later in the disease they progress to Secondary Progressive. These people no longer have relapses and remissions. They just go into steady progression of the disease and to disability. (Kraft & Catanzaro, 1996, pp. 10-12) Multiple Sclerosis victims can, however, remain stable for many years. Is there a predictive value to how long it will take to become disabled? Generally the fewer relapses in the first year the longer the person should remain stable. Optic neuritis is a good indicator that it will progress slowly. But things can change at any time. Above all thing the better the person takes care of him or herself the longer they can hope to prolong the disability. (Sheremata, 2006, pp. 39-41 22
  23. 23. Part VI: Symptoms of Multiple Sclerosis Symptoms of Multiple Sclerosis differ from person to person and can change continuously. There are however some common symptoms. About half the victims of Multiple Sclerosis have unexplained difficulty walking early in the disease. This is due to muscle weakness, in one or both legs. It is also very common after prolonged physical activity and with heat exposure. This is because both raise the body temperature and cause some inflammation or heating of the brain, and thereby causing a mild flare up of the Multiple Sclerosis. Another common symptom is Optic Neuritis. Many with this symptom and diagnosis will be diagnosed with Multiple Sclerosis within a year of this diagnosis. About half of those with Optic Neuritis will have a second neurological difficulty within a year. Coordination difficulties or tremor indicate neurological involvement and are common for Multiple Sclerosis victims. This can present as Nystagmus, tremor of the eyes or in fingers or limbs of in speaking. Visual problems are common over time, including double vision, blurring, and pain in the eyes. Blindness can occur but is not common even though it can occur during or as a relapse symptom. Fatigue is very common in Multiple Sclerosis. It accompanies relapses and can also be an ongoing problem. It can cause sudden lack of energy or be the result of prolonged activity. It causes sever limitation at times. It is used by Social Security 23
  24. 24. called Fatigability meaning a person cannot sustain activity long without fatiguing. It is on the Extended Disability Scoring System scale (EDSS). Other symptoms of Multiple Sclerosis are speech difficulty or articulation problems, vertigo, muscle spasms, muscle jerks, bladder problems, ataxia, spasticity, sexual dysfunction, pain, cognitive deficits, swallowing dysfunction, respiratory dysfunction, sensitivity to temperature extremes, depression, psychological dysfunction. Numbness, balance problems, slurred speech, burning sensation, memory loss and personality changes. (Burnfield, 2006, pp15-27), (Kraft & Catanzaro, 1996, pp.13-31), Polman, Thompson, Murray & McDonald, 2001, pp. 43-62), (Sheremata, 2006, pp. 15-27) By now it should be obvious that a person who has Multiple Sclerosis is living with many emotions and is never sure what will happen next in his or her life. There is a great need for the professional to become familiar with all that a Multiple Sclerosis victim has to deal with and with the losses as a result of this disease. The uncertainty of each day is hard enough for someone without Multiple Sclerosis but it is magnified a million fold for the victim. 24
  25. 25. Part VII: Current Treatments for Multiple Sclerosis There are no cures for Multiple Sclerosis. For about 10 years however there have been a few medications that seem to control it and more recently a few other medications have been put on the market. They are divided into three categories: symptomatic treatment, management of relapses and relapse reduction treatment. The following are the medications available at this time for controlling and treating Multiple Sclerosis. Symptomatic Treatments: 1. For symptoms discussed earlier in this course, there are medications that can help the victim. a. For pain management drugs used for epilepsy are indicated. b. For fatigue Amantadine is effective. Amphetamines and Ritalin are also used but habituation occurs quickly with them. Another drug called Provigil has had limited effectiveness. The potassium channel blocker 4-Aminopyridine has been used with some success but side effects have been a problem. c. Muscle stiffness including cramps due to impaired sensation in the legs is not easy to treat effectively. However, drugs such as Valium, 25
  26. 26. Lioresal and Zanaflex can help. Others include Baclofen, Tizanidine, Dantrolene and Benzodiazepines. d. Bladder dysfunction is important to avoid infections. Urinary catheterization is sometimes needed to empty the bladder. For urinary frequency anticholinergic drugs can be helpful. Oxybutynin has been effective as is Tolterodine Tartrate. For nocturia Desmopressin may help. Biofeedback has sometimes helped, as has electrostimulation of the pelvic floor muscles in women followed by pelvic floor exercises for 6 months. e. Coordination problems or Ataxia, including tremors have not gotten substantial relief. Drugs utilized have been Isoniazid, Carbamazepine, Clonazepam and Buspirone. Surgical intervention has been beneficial for tremors. f. Bowel dysfunction can happen with bladder dysfunction. Colonics and laxatives help, increasing dietary fiber or Loperamide or Codeine Phosphate can be effective. g. For sexual dysfunction vaginal lubricants, Viagra for men and women, Prostaglandin E1, dilatory creams and Yohimbine can all be effective. h. Pain management is very often necessary as it can become extreme or be chronic. Carbamazepine is a first line treatment and others 26
  27. 27. include Phenytoin, Gabapentin, Clonazepam, and physiotherapy can help. Nonsteroidal anti-inflammatory drugs, electrical stimulation (TENS), heating pads can all be effective. i. Paroxysmal symptoms like spasms respond well to Carbamazepine, Gabapentin or Bromocriptine. j. Cognitive Symptoms occur in about 60% of the victims of Multiple Sclerosis. Memory impairment and higher level reasoning, executive functions, visuospatial perception and affect attention all should be assessed and addressed. The victims of cognitive deficits can be help with cognitive training and psychotherapy but there is no proven effective treatment. k. Vertigo is quite common in Multiple Sclerosis. It can cause great distress for the victim. Prochlorperazine can help as can physiotherapy including Cawthorne-Cooksey exercises together with Cinnarazine can help for chronic vertigo. l. Visual dysfunction is usually transient can be treated with Baclofen, Gabapentin and Isoniazid. m. Swallowing, speech and respiratory dysfunction can be treated with speech therapy, gastrostomy and respiratory support may be necessary 27
  28. 28. n. Temperature sensitivity can cause increase of other symptoms such as visual function or muscle weakness and tremors. Staying cool or warm with Air-conditioning or cool vests helps, as does proper regulation of heat. o. Emotional and psychological dysfunction is increased in people with Multiple Sclerosis. The person might have anxiety, depression, irritability, and poor concentration. Desipramine can be effective. Psychotherapy can help with support, validation and coping with the disease but deeper issues of decreased self-esteem and grief and anxiety may not be relieved. The Multiple Sclerosis victim has many levels of loss from job to mobility, driving privileges, social and cognitive interactions, relationships, self-esteem and self-worth, and the list goes on. Therapy must be specific to the current issue and lots of support is very important. Helping the person deal with all the losses and grieve adequately is imperative. Losses that include losing a partner are life altering in addition to the loss of the full use of the body. Together this can be a very lethal combination for the person. Friends can also alienate the person due to lack of knowledge or fear of being asked to do care taking tasks. For whatever reason. When the person looses relationships after losing their control over what is happening to their body it can prove to be quite overwhelming. Allowing venting of anger and sadness, hopelessness, fear, loneliness, confusion, anxiety and panic over the unpredictability of the disease, 28
  29. 29. dread of total disability, fear of death from complications of Multiple Sclerosis, all of this alters the life of the Multiple Sclerosis victim. The drugs used to manage and lessen relapses come with side effects and damage to organs in the body. The stress of managing the side effects can be very overwhelming for the person. It is true that there is no therapy that can relieve the victim of Multiple Sclerosis’ effects. However, taking all of the above into consideration will help the professional who may be treating and counseling the Multiple Sclerosis victim. The more the professional understands this disease and its effects the better he or she can assist the person deal with it and find a way to live a productive life in their ever changing bodies. They can be helped to find new meaning and purpose. This is an extremely difficult task. As in any debilitating disease that is long term, it is a special type support that needs to be given. The sensitivity of the professional treating the victim is first and foremost in gaining the trust of the victim that he or she will find the support and guidance needed. Next we will review the treatments that are used for the relapses of Multiple Sclerosis and that are used to reduce these relapses. The speed of recovery is what is affected by these treatments. When a person has a Multiple Sclerosis attack or relapse there are drugs that can shorten it. The only one currently FDA approved is Adrenocorticotrophic hormone or ACTH. It is also known as corticotrophin. This drug stimulates the body’s 29
  30. 30. endogenous steroids, which then reduce the inflammation in the brain or spinal cord. It is however only slightly effective. Because of this the physicians usually prescribe oral or high dose IV steroids, Methylprednisolone or Medrol. This and Prednisone have many dangerous side effects. Although the steroid produces a sense of well being initially and relieves the fatigue it dehydrates, causes edema and fluid retention sometimes causing heart problems, can cause rash and acne, thrush, irritability, bone loss, sleeplessness, headaches, psychosis, hallucinations, personality changes, risk of infection, cataracts, moon face, high blood pressure, osteoporosis, muscle damage, ischemic necrosis of hips and joints, weight gain and more. Coming off the steroid quickly can cause serious reactions and weight loss can take up to a year to lose the weight or it can never be lost. Is the benefit worth the risks? Some people tolerate the steroid fairly well and some not at all. Both drugs can be used together incidentally. (Kraft & Catanzaro, 1996, p. 71) (Sheremata, 2006, pp. 97- 108) In 1993, after the appropriate trials were completed, the FDA approved the first drug for treating relapsing Multiple Sclerosis. This was interferon-beta-1b, named Betaseron. Then in 1996 interferon-beta-1a, called Avonex followed. Next was glatiramer acetate, or Cpoaxone in 1997. In 2002 Rebif was approved. The differences in the interferons are mainly the dosage, higher reducing more MRI lesions. Betaseron and Refib are the ones with the highest doses. Of course with higher doses come more side effects. Some people however can tolerate them. The effects on the organs are variable. A risk is that the patient can develop antibodies to the drug and then it would become useless for a treatment option for that patient. 30
  31. 31. The interferons are administered by injection weekly in large muscle for Avonex, three times a week subcutaneous for Betaseron and every other subcutaneous for Rebif. The reactions and side effects after administering the drug are fever, flu like symptoms, headache, site reactions (more common for the higher does interferons of Rebif and Betaseron), aches and pains, fatigue. Other side effects can be liver failure, kidney failure, cardiac problems, seizures, depression, suicidal ideation, with any of the interferons it is imperative to regularly check liver functions, lipids, CBC, and MP. (Burnfield, 2004, p. 35), (Kraft & Catanzaro, 1996, pp. 72-72), (Sheremata, 2006, pp. 108-109) The drug Copaxone is injected daily subcutaneous. Site reactions, anxiety and difficulty breathing are side effects. This drug acts as a decoy for the cells that destroy the myelin. It promotes development of antigen-specific suppression T-cells. It has fewer side effects so far than the interferons and no antibodies have been found to develop from it. (Kraft & Catanzaro, 1996, p. 76) Novantrone is a drug that suppresses the immune system but it can cause very serious side effects such as cardiac complications and leukemia, and is used only for very severe cases. It is administered every three months by IV into a vein. (Burnfield, 2004, p. 35), (Sheremata, 2006, p 103) The newest drug, Natalizumab (Tysabri) was approved and released in 2004. This drug was to reduce the risk of sustained disability at 2 years into Multiple Sclerosis by 42%. It is administered IV in 300 mg doses every month. The drug was effective preliminarily but due to several patients who had been on Avonex deaths, it was 31
  32. 32. withdrawn. Some patients developed a fatal opportunistic brain virus. One with Crohn’s disease also developed the disease. It was very effective for those who could take it without serious side effects or death and has been released once again for use. (Sheremata, 2006, pp. 113-114) (Burnfield, 2004, p. 35) Alternative therapies do have a place in treatment for Multiple Sclerosis and they are on the increase. Without getting into the arguments for and against alternative therapies, what is important is that there are benefits for many who choose to use them. Hypnosis and biofeedback are helpful and can be used in conjunction with psychotherapy. Chiropractic work, massage, meditation, Reiki, Tai Chi, acupuncture, all have their place in treatment of many if not all illnesses and conditions. The right one for the right person is as important as the right medication for the right patient. Herbal preparations are as variable as allopathic drug preparations and should be discussed with a doctor who is open to the alternative healing arts and therapies. (Kraft & Catanzaro, 1996, pp. 77-81), Polman, Thompson, Murray & McDonald, 2001, pp. 79-85), (Sheremata, 2006, pp.122-123) 32
  33. 33. Part V111: Pros and Cons of Multiple Sclerosis Treatments Clearly there are a few treatments that are available and proven to work in reducing symptoms and relapses of Multiple Sclerosis. Not every treatment is right for every person and each one must find the one that fits with him or her. Obviously a person with certain conditions such as advanced kidney or liver disease would not be suitable for the interferons and might want to choose the Copaxone. There are some who respond very well to the steroids and some for whom they are deadly. Some can tolerate the higher dose interferons and some cannot. Sometimes it is a matter of trial and error and the right one will tease itself to the forefront but also that does not mean it will always be the right one. Sometimes a person can use a treatment for years and then suddenly must stop using it. Another consideration in which treatment is right for whom is the cost. Most of the treatments are very expensive. Insurance will help pay for the drug or may pay it all but for those who do not have insurance or who cannot afford the drug they might be forced to use the steroids. Steroids are relatively inexpensive compared to the interferons. And some will not be able to use any treatments. At the same time, some may not benefit from the treatments if they are progressing rapidly. There are a few other drugs being investigated and trials are always being conducted. 33
  34. 34. Part IX: Professional Role in the Treatment and Support of Multiple Sclerosis Victims As a professional who might be treating a victim of Multiple Sclerosis, it is important to know all you can about the disease. The victims of Multiple Sclerosis have many losses and fears, relationship problems, self esteem issues, depression, anxiety, cognitive deficits, and so much more to deal with. There is no cure for Multiple Sclerosis and does not seem that there ever will be. Helping the victim accept that fact and learn to live with the disease is something that is very important in treating the victims. Assessing the support system is another factor that is important. They must have support and ongoing outlets for their emotions. There are cognitive and personality changes that accompany Multiple Sclerosis as well and finding supports that allow for these deficits is important. Neuropsychologists can provide help in learning how to live with cognitive and personality deficits. Psychotherapists can help with coping with their losses and fears. Peer support can provide a place for them to function at similar levels to their peers. Medical support is imperative. Spiritual support is vital as well. A Multiple Sclerosis victim may have loss body functions or abilities and may be self-conscious and feel like less than a person. Fears of complete paralysis, blindness, incontinency etc. are real and a very horrifying reality that can prevent the victim from carrying on with life in a productive manner. Quality of life may deteriorate. The Multiple Sclerosis victim may lose hope and become suicidal, especially after diagnosis or an attack. Regrettably, many victims of Multiple 34
  35. 35. Sclerosis lose their mates due to the demands that Multiple Sclerosis puts on spouses or family members. The victims can be left alone and hopeless. Socially, friends may disappear because they do not understand the disease and might think it is contagious or that they will be called to help out more than they can deal with. Some are not used to seeing the victim feeling helpless and needy and cannot face that truth that they themselves might be in that position some day. Reality is a tough road for many to travel. The professional can provide valuable support and encouragement, resources and support group information, a place to vent anger and fear, frustration and feelings that do not even have a name. Providing holistic resources can also provide spiritual healing or if the professional is holistic as well at traditional, can be provided by the same person. Education is vital for the victim of Multiple Sclerosis and can fill in many blanks that have not been answered. From my own experience, the day I was diagnosed I was totally devastated. Nothing in my life had prepared me to deal with this diagnosis. For many years I had had an intuition that I might have Multiple Sclerosis and that fear lurked in the background. But the diagnosis still was a horrible shock. I became very depressed and felt hopeless, cried all the time for months. I was terrified. And I was alone. The way the disease presented was I became paralyzed on one side of my body. I was alone and in a new state. I was in my bed with no help for two weeks, barely able to help myself. You cannot know how difficult it is to live with only one side of your body working. You cannot put clothes on, wash your hair, and put makeup on. It is something we take for granted until we lose half our body. In addition to the 35
  36. 36. physical challenges, the prednisone that the doctor put me on was wreaking havoc. Every side effect listed I had. It was crazy. I thought I was going to die from the steroid. I ended up with diabetes type two, a heart condition, fat and dehydrated, potassium depleted, bloated, had a rash, could not sleep, developed an ulcer from the oral prednisone, was hallucinating and my blood pressure was through the roof. I felt like I was losing my mind. This in addition to the paralysis and a doctor who was totally insensitive, yelled at me for crying, and was unavailable for calls when I felt like I was going to die from the medicine. When I could drive myself limping into a clinic I was seen by a very caring doctor whose wife had Multiple Sclerosis. He was there for me and was very informative. He got me connected to a neuropsychologist who was able to help me deal with this horror that I had to deal with. I eventually was able to regain my balance and find peace. In about three weeks, with physical therapy, I was on my way to being almost like new. What helped me was doing a living will, having a surrogate, and a will, and knowing that all I had to do was live each day as it came. If I chose to, I could rethink my plans when things changed. I was able to move forward with the support that I received and today, 14 years later I am not doing too badly. I cannot say what tomorrow will bring since the paralysis came over night and I still have a bit of nerve damage and tremor but all in all, I seem to be ok to the public eye. Was I able to find this balance because I am a psychotherapist and holistic healer? I do not know. But I do know that somehow I did find it and even though fear is always lurking in the shadows, today I am ok. What did I need in order to find my balance? A good neurologist, a good therapist, a good support system, a Reiki/meditation group, and 36
  37. 37. to go on with my life. I was put on the interferon called Avonex after the steroid treatment. I have had quite a time with side effects but the way I deal with them is to plan my day. I know that for 24 hours I will be sick. After getting my injection, I cook a good meal, shower and clean the house, and plan that in about 3 hours I will be totally fatigued, have a migraine, no appetite, ache all over and have a fever. So I eat and then go lay down and watch television as I drift in and out of sleep. In this way I make my injection day a special time for pampering myself. When I get up the next morning I am just like new. There are side effects that cause organ damage so I eat organic foods, I do not drink, use recreational drugs and do not smoke. I honor my body and respect what it needs. When I am tired I rest. When I am hungry I eat. I rid my life of as much stress as I can and stay calm. When I feel I cannot keep a date I say so and stay home and rest. The key is to listen to your body. It will tell you what you need. I live this truth. So as the therapist and as the victim of Multiple Sclerosis I know what is needed and how to convey that to you. Finding hope is the single most important factor for the victim of Multiple Sclerosis. After that things will fall into place. Each day can be better than the last. Positive mental attitude is critical, and in addition, I say what I need to and I do not take on more than I should. Hearing about Multiple Sclerosis and how to help the victims of it from both sides, therapist and victim of it, I hope this will give professionals the tools to work with Multiple Sclerosis victims. Why do I call us victims? Because we do not control weather we get Multiple Sclerosis or not and there is no cure for it. However, we can take a proactive approach and do what we can do to keep ourselves as healthy as possible. In turn, 37
  38. 38. to the degree the disease is able to respond to positive attitude and healthy practices, we can feel good about our effort to live a good quality of life for as long as possible. The professional can hopefully appreciate the need to understand this disease and provide as much support and guidance and healing as possible for the victims of this debilitating disease and change the type of support as the needs change with the disease. In utilizing alternative and holistic approaches as well as traditional ones, the professional can devise a treatment plan that will allow the victim to choose modalities that will fit with the abilities and disabilities in a flexible way depending on the presenting symptoms. 38
  39. 39. Part X: Available Literature and Support Systems for Victims of Multiple Sclerosis Coping with Multiple Sclerosis means there must be support for helping the person stay connected and involved in life, and literature for continuing information on new treatments and finding, new resources and more. Support can come in several ways. A therapist is an excellent source of support. Sometimes the victim is having a very hard time accepting the diagnosis or coping with it after acceptance. Some people are alone and have no network, no family, no friends, and no other source of support. The therapist can be a very important figure in the Multiple Sclerosis victim’s life. In addition to a psychotherapist, other adjunct service providers are also important. These can be physical therapist, neurologist and other doctors who monitor the patient, alternative and holistic healing providers, neighborhood senior and disabled persons groups, support groups, etc. The National Multiple Sclerosis Society and the Multiple Sclerosis Foundation are two agencies that are valuable sources of support groups, information, literature and assistance of many types. Churches and meditation groups are also helpful. Knowledge is power in when dealing with this disease. Knowing one’s body is also critical in staying well. For instance, knowing that Multiple Sclerosis victim might also have Hypothyroidism, a common additional condition for the person with Multiple Sclerosis. If a person does not know this can occur it might go undetected and untreated, perhaps forever with sometimes-serious symptoms. Another valuable piece of information for the person is that withdrawal of the treatment may precipitate a relapse. Therefore, knowledge is critical. (Sheremata, 2006, pp. 70-80) Alternative therapies can provide support groups. Meditation and Tai Chi are two such groups. (Kraft & Catanzaro, 1996, pp. 77- 39
  40. 40. List of Resources 1. National Multiple Sclerosis Society 733 Third Avenue New York, NY 10017 Phone: 1-800-344-3867 Website: 2. Multiple Sclerosis Foundation 6350 North Andrews Avenue Fort Lauderdale, FL. 33309-2130 Phone: 1-888-MSFOCUS Website: 3. Multiple Sclerosis International Foundation 3rd Floor, Skyline House 200 Union Street London SE1olx Phone: +44 (0) 20 7620 1911 Website: 40
  41. 41. 4. All About Multiple Sclerosis Website: 5. Keep S’Myelin Website: 6. MS World Website: 7. Multiple Sclerosis Association of America (MSAA) 706 Haddonfield Road Cherry Hill, NJ 08002 Phone: 1-800-LearnMS Website: 8. The National Organization for Rare Diseases Website: 41
  42. 42. 9. The Montel Williams Foundation 331 West 57th Street PMB #420 New York, NY 10019 Phone: 212-830-0343 Fax: 212-262-4608 Website: 10. Pharmaceutical Industry: Berlex (Betaseron) Website: 11. Biogen-Idec (Avonex) Website: 12. Serono (Rebif) 42
  43. 43. Website: 13. Teva (Copaxone) Website: 43
  44. 44. Books 1. Abramovitz, Meissa. Multiple Sclerosis. Farmington Hills, Mich.: Gale Groups, 2002. 2. Aaseng, Nathan. Multiple Sclerosis. Danbury, Conn.: Scholastic Library, 2000. 3. Burnett, Betty, and Rob Gevertz. Coping with Multiple Sclerosis. New York: Rosen Publishing, 2001. 4. Gold, Susan Dudley. Multiple Sclerosis. Berkeley Heights, N.J.:Enslow Publishers, 2001 5. Goldstein, Margaret J. Everything You Need to Know about Multiple Sclerosis. New York: Rosen Publishing, 2001. 6. Smith, Jennifer Crown. Dad’s Falling Apart: Keeping It Together When a Family Member Has Multiple Sclerosis. Albuquerque, N. Mex.: Health Press, 2003. 7. Susman, Edward. Multiple Sclerosis. Berkeley Heights, N.J.: Enslow Publishers, 1999. 8. Swank. Roy: A Diet for Multiple Sclerosis (Doubleday Publishers) 44
  45. 45. Alternative and Holistic Medicine Resources 1. Bowling AC. Alternative Medicine and Multiple Sclerosis. New York: Demos Medical Publishing. 2001. 2. Cassileth BR. The Alternative Medicine Handbook: The Complete Reference Guide to Alternative and Complementary Therapies. New York: W.W. Norton, 1998. 45
  46. 46. Exercise Videos 1. Keep Fit While You Sleep (1992) Suggested Audience: Persons who use wheelchairs VHS ½ inch Order From: Twin Peaks Press P.O. Box 129 Vancouver, WA 98666 Phone: 1-800-637-2256 Cost: $29.95 + S&H 3. The MS Workout Suggested Audience: Persons who are ambulatory without aids VHS ½ inch Order From: National Multiple Sclerosis Society New York City Chapter 30 West 26th Street New York, NY 10010 46
  47. 47. 212-463-7787 Cost: $15.00 4. The Wheelchair Workout Suggested audience: Persons who use wheelchairs VHX ½ inch Order From: National Multiple Sclerosis Society New York City Chapter 30 West 26th Street New York, NY 10010 212-463-7787 Cost: $15.00 5. Armchair Fitness Suggested audience: Range from persons who are ambulatory to those who use wheelchairs VHS ½ inch: 60 minutes Order From: CC-M Productions 8510 Cedar Street 47
  48. 48. Silver Springs, MS 20910 1-800-453-6280 Cost: $39.95 48
  49. 49. Part XI: The Future of Treatments for Multiple Sclerosis Many new drugs are currently being studied and there are ongoing trials and research being conducted. Although there does not seem to be much hope for finding a cure for Multiple Sclerosis, new drugs to manage symptoms and further lessen relapse rates are on the horizon. Continued support from the community and from the FDA is needed to provide the funding to continue the research. Perhaps in time Multiple Sclerosis will be a much slower and less debilitating disease. Stem Cell research can bring hope of reversing demylination, as it proved for regeneration of nerves in stroke and paralysis victims. It is unfortunate that a cure does not seem a possibility. Because of the nature of the disease and the lack of hard evidence of causes of it may remain a mystery. As long as drugs to manage the disease continue to emerge life will continue to become more productive for the victims of the monster called Multiple Sclerosis. 49
  50. 50. Bibliography Burnfield, Alexander, 2004. Just the Facts: Multiple Sclerosis. Reed Elsevler Inc., Chicago, IL. Kraft, George H., & Catanzaro, Marci, R.N., Ph.D.,1996. Living With Multiple Sclerosis: A Wellness Approach.. Demos Vermande, New York, NY. Polman, Chris H., Thompson, Alan J. & Mcdonald, W. Ian, 2001. Multiple Sclerosis: The Guide to Treatment and Management. Demos Medical Publishing, Inc., New York, N.Y. Sheremata, William A., M.D., 2006. 100 Questions & Answers About Multiple Sclerosis. James and Bartlett Publishers, Sudbury, MA. Wrong 50