Multiple Sclerosis is a fluctuating, at times disabling illness of the central nervous system that disturbs the stream of information between the body and the brain. Although very difficult to determine, this disease affects approximately 2.3 million people, globally. The National MS Society, in 2002, approximated that those living with the disease in the United States was 400,000 and is elevated from the previous 123,000 estimates at the end of the 1980’s. This increased rate of diagnosis probably associates with a heightened recognition of the disease along with improved testing methods.
The majority of those diagnosed with MS are between the ages of 20 and 50, and reports state that it affects females two to three times more often than males. Investigations have proposed that gender, geographic location and one’s race, may have an impact on the risk factors for developing the disease. Multiple Sclerosis is most commonly found in Caucasian groups of northern European ancestry, although can occur in all ethnicities.
The average person who lives in the America has a 0.1% chance for developing the illness, and women are affected more than men leading some scientists to suspect a hormonal connection. Investigations have shown African-American women may have a higher risk than previously suspected. Cigarette smoking tends to both heighten a person’s risk for developing and exacerbates symptoms although the causal relationship is unknown. A person who has the same genetic make-up or an identical twin of someone with MS has a twenty-five percent chance of developing the disease. The genetic risk factor is only one in four indicating that other elements, including bacterial or viral triggers, geographic location and ethnicity are likely contributors to disease development.
Manifestations range from tingling to numbness to paralysis and other complications may range from vision problems to blindness. The medical profession cannot predict the intensity, progression and exact symptoms in any one person, however, advances in research and treatments are progressing with the hopes of improving the quality of life for those afflicted. MS effects roughly 2.3 million people worldwide, however, in the United States physicians are not required to report. Therefore, without precise, dependable recording of data, epidemiological estimations and the study of this illness is difficult, if not impossible at times to investigate.
Defining Multiple Sclerosis
Multiple Sclerosis (MS) is an advancing, neurological disorder in which the protective layers that wrap around the nerve fibers (myelin sheaths) are destroyed in sectional chunks throughout the central nervous system. Myelin
sheaths stimulate the communication of signals between nerves and without this myelin brain-to-body expression becomes markedly obstructed or delayed. MS is characterized by recurring periods of remissions and relapses, gradually producing physical and emotional disabilities. The fluctuating reappearance of relapses causes excessive emotional suffering in patients and their loved ones because it is challenging for those afflicted to perform basic functions involving tasks of daily living.
There is no established well-known cause for Multiple Sclerosis, although some researchers theorize a genetic and immunological association. One suggested causal connection is an infection or virus which when activated, sets off an autoimmune reaction, leading to the disintegration of myelin sheaths. Other scientists suggest a genetic susceptibility, stating that the risk of developing the illness seems to increase for those whose parents or siblings have the disease. There is a higher incidence among individuals who have a distinct type of genetic marker (HLA-DR2).
Controlled by the site of the demyelinated patches within the central nervous system, signs and symptoms vary enormously. For example, if damage to the myelin sheath is at the location of the brain that regulates facial sensation or movement, the symptoms will pertain to facial paralysis, discomfort, or muscle contractions. If the myelin is impaired in the area of the optic nerve that controls sight, then the person may have deficits in vision. The typical symptoms are impaired cognitive abilities, weakness in the limbs, abnormal functioning of the bladder, visual impairments, and numbness in the face, extremities, or trunk. Symptoms in the beginning phases may appear minor, signifying as slight peculiarities in walking, fatigue, stiffness in the limbs, or dizziness. As the disease advances, the gait becomes more uncoordinated and awkward, ultimately making walking very burdensome, if not impossible unless the individual is supported by a caregiver or an apparatus. However, it is important to understand that the majority of those diagnosed will never need a wheelchair and over half will experience no major disruptions in normal activities.
Remissions can last months to more than a decade and exacerbations can occur as often as three times per year, however, the intensity and frequency of relapses vary, thus making the prognosis hard to predict. Only those few who have been diagnosed with a very severe case will have a reduced lifespan. A suspected diagnosis of MS is made when numerous symptoms occur in concert especially in someone who has a history of remissions and exacerbations. An MRI is the most precise imaging test to rule out the condition and in some cases is utilized in conjunction with central spinal fluid examination and blood tests. A complete diagnosis is made if the brain and spinal cord MRI results correlate with the individual’s past and present medical history. As expected, being diagnosed with this major illness may cause symptoms of depression and cognitive impairments are typical, highlighting the need for physicians and health psychologists to address the emotional challenges.
Initially, multiple sclerosis can be challenging for physicians to diagnose because the vast majority of those with the illness have trademarks of the first type, relapsing-remitting. A combination of medications, physical, speech and occupational therapies, exercise, rest and healthy nutrition may help to relieve symptoms promoting a gratifying quality of life.
The Types of MS
- Relapsing–remitting is the most common affecting approximately 85% of those who have the diagnosis. This type has flare-ups identified as being relapses or exacerbations of symptoms followed by times of remission when manifestations improve or cease to exist.
- Secondary progressive types may occur in those with previously existing relapsing–remitting disease. The illness continues to progress and may have periods of remission or a levelling off of symptom severity. For many the treatment includes disease-modifying medications that may help delay the progression.
- Primary progressive affects approximately 10% of those diagnosed, and the symptoms gradually worsen from the time of the initial diagnosis. This type is more resistant to the medications that are prescribed, and there are no remissions. However, there may be elevations or plateaus.
- Progressive-relapsing is a rare type and affects less than 5% of those diagnosed and is progressive having intermittent flare-ups of worsening symptoms. There are no periods of remission where manifestations improve or cease to exist.
The ABC’s of Multiple Sclerosis
- Many scientists think MS is an autoimmune disease in which the immune system directs an assault against healthy body tissue.
- This disease is an unstable condition of the central nervous system. It varies from being relatively benign to moderately disabling to becoming a devastating handicap. This variation occurs because communication between the brain and other specific areas of the body are compromised.
- An unidentified environmental cause, such as a virus, causing the miscommunication may relate to the nerve-insulating myelin being under assault thereby damage occurs.
- Research investigations have shown that the sufferers have a high rate of chronic pain and fifty percent struggle with depression. Treatment includes medications, individual and family therapy
- Muscle fatigue
- Deficits in Vision
- Tiredness and Depression
- Swallowing and Speech problems
- Bladder and Bowel complications
- Tingling, Numbness or pain in the extremities
- Cognitive, Memory or concentration problems
The rate of newly diagnosed cases (incidence) and those living with the disease (prevalence) having psychological problems is understandably pronounced. The fundamental cause and the degree to which emotional disruptions are a reaction to psychosocial factors or expressions of the real advancements of the condition are puzzling. Depression is the prevailing emotional disturbance having a lifetime occurrence of approximately 50% and with some patients a yearly occurrence of 20%. As expected, depression is common during relapses that intensify fatigue and thinking problems especially when there is no firm evidence for the cause being a medication side effect. Treating the signs of depression improves the likelihood of patients taking the disease-modifying medicines. Symptoms of anxiety are also common, often occurring in the newly diagnosed and in combination with depression there has been reported to be an increase in thoughts and feelings relating to suicide.
Treatment of Multiple Sclerosis
The physician bases the treatment on symptoms that is supportive in nature, and no two treatment regimens are the same because expressions of the illness vary extensively. However, medications include a combination of corticosteroids, antidepressants and pain relievers. Signs of depression are often managed by using a combination of antidepressants and or therapy with/without medication depending on the severity and the patient’s preference. A short course of corticosteroids reduces the intensity of exacerbations, spasticity is taken care of by using muscle relaxants, and a physical therapy recommendation maintains the patient’s ability to ambulate. For physical discomforts, gabapentin and antidepressants are commonly part of the medical treatment plan. Supportive treatments include Vitamin D therapy, daily exercise, participating in stress-reducing activities, and education regarding dodging triggers such as excessive heat environments and work overload.
Current reports indicate that between 30% – 70% of MS patients, have used an alternative medicine treatment, and approximately 90% of those using alternative methods also adhere to conventional medical therapies. Doctors of alternative medicine have an integrative approach to care and treatment regimens may include a combination of dietary and lifestyle modifications in combination with nutritional supplements. A few classic dietary treatment strategies are prescribing omega-3-rich and anti-inflammatory diets, antioxidant therapy, and taking Vitamin D supplements. Research studies on complementary and alternative medicine treatments are limited; however, two national organizations the National Institute of Health and National Multiple Sclerosis Society have advertised support and are urging the continuation of scientific research.
Research trials explore the medical professions hope of finding new therapies and they are investigating the possibilities of reversing the damage via re-myelination to develop neuroprotective treatments. As genetic research heightens our ability to understand the pathology scientists hope to produce customized therapies that are unique to individual patients’ symptoms. The author of MS Research Update (2015), Dr. Stephen Krieger believes that there is a hopeful future for therapies involving disease-modifying immunomodulatory drugs. Ongoing investigations aim to explore the efficiency of current immune-modulators medications along with evaluating upcoming drugs. Dr. Krieger points out that with the rise and complexity of treatment approaches along with new medical information relating to MS, it is essential for people to educate themselves and to be an active partner in the management of their care.
Psychological effects of Multiple Sclerosis
- Generalized anxiety and irritability
- Uncontrollable crying and laughing
- Stress reactions to everyday life situations
- Unusual behaviors such as sexual impulsivity
- Mood Swings often changing in frequency or emotional lability
- Grieving for physical and emotional losses related to the disease
- Symptoms of depression leading into Major Depressive Episodes
The emotional baggage that relates to MS is in part caused by the unpredictable nature of the illness. The inability to anticipate future flair ups contribute to emotions related to denial, grief due to feelings connected to the loss of control over one’s life and hopelessness. Studies imply that clinical depression among those diagnosed with MS is more prevalent than people in the general population or among those with other chronic diseases. Psychological or environmental triggers related to flair ups can be linked to physical and emotional complications confirm the usefulness of learning psychological treatment strategies.
MS patients commonly feel indifferent or apathetic, have poor judgment and are understandably moody. Some people exhibit improper behaviors such as impulsivity or irresistible shifts of crying and laughter. It is essential in understanding that as the illness advances, these changes in mood and behaviors will emerge not just from anxiety relating to the emotional impact, but also from possible brain-related changes. As the condition progresses, it becomes increasingly more difficult to determine which emotional symptoms are direct results from brain damage, or if they are an expression of psychological torment. It is paramount for both the patient and their loved ones to have treatment resources for managing psychological and the physical impacts.
Dr. David Rintell (Brigham & Women’s Hospital, Boston) responds to the emotional problems associated with those diagnosed in his practice. This researcher was funded by the National MS Society to study ways to help enhance mental health. Those diagnosed with MS requested mental health care recommendations without hesitation at diagnosis, and this desire needs to be accepted by providers as being a very meaningful part of the treatment plan. The hard facts of receiving this information can be devastating, as expressed by one “it felt like my whole world came crashing down.” Understandably, patients want to work with a mental health therapist who was familiar with the illness, such as a health psychologist because they were discouraged and frustrated when they had to educate counselors about the condition. Members of his study also mentioned that it was favorable and useful to include loved ones and family members occasionally to discuss communication and relationship problems that may arise throughout the course of treatment.
The link between MS and stress is an interesting concern because some investigations point to an association between stressful life events and onset or relapses relating to the condition. However, the evidence supporting this belief thus far is inconclusive. People with medical conditions, in particular, those with inflammatory illnesses, such as MS, frequently experience fatigue and symptoms of depression. However, this depression may be caused by a different biological mechanism. The director of Cedars-Sinai’s Multiple Sclerosis Program and the Neurology Residency Program, Dr. Sicotte, states that their studies are designed to assist in understanding how MS-related depression stands apart from other types. One study observed women with certain types of depression had a decrease in the area of the right hippocampus that did not relate to other kinds of depression. The left hippocampus was of standard size for both groups. This report confirms the previous Multiple Sclerosis investigations implying that the hippocampus shrinkage may contribute to the occurrence of depression. The advancement of diagnostic imaging systems makes testing widely accessible, and the improved efficiency will create precise, more individualized treatments.
Along with the physical expressions of the disease, MS may have serious emotional chain reactions. Initially, it may be tough adjusting to the unpredictable aspects of the disorder that has a fluctuating course and has a risk of progressing to a point of leading to physical disability. Lack of awareness and knowledge adds to anxieties along with the emotional effects of coping with the diagnosis, damage to nerve fibers and demyelination in the brain may also produce psychological distress. Medications prescribed in MS, such as corticosteroids also have powerful side effects related to emotional stability that not everyone experiences.
According to a report published in Neurology, people diagnosed with multiple sclerosis who accepted stress management counseling experienced less advanced disease activity, however, the positive effects of the therapy did not continue once treatment ended. Dr. Mohr states that “It’s possible that people were not able to sustain their new coping skills once the support ended, or that some aspect of the treatment other than stress management skills, such as the social support, was the most beneficial part of the treatment.” The capacity in maintaining coping skills once the therapy ends has been previously reported, and therapists label this problem as “making treatments stick.” Some therapists think that this phenomenon relates to the reinforcing effects of weekly appointments.
Less frequent emotional symptoms or diagnoses, such as bipolar affective disorder, psychosis or untimely laughing and crying occur less regularly. Treatment approaches include psychotherapy, mindfulness training, and cognitive behavioral therapy focusing on relaxation techniques, strengthening of coping skills, and at times antidepressant or anxiety-reducing medications. The creative aspects relating to the various health care workers is to furnish the best precise individual care with having the goal of lessening the burden and improving the patients’ quality of life.
Driving Psychosocial Wellness
Finding solutions via encouraging research is crucial to discovering treatments that improve the quality of lives of those diagnosed with MS, especially the psycho-social manifestations of the disease. These include both emotional and cognitive complications. MS causes distinct cognitive problems and researchers strive to connect precise cognitive deficiencies with deformities in particular areas of the brain.
There continues to be an explosion of scientific research using functional magnetic resonance imaging (fMRI), which is an imaging technique measuring the supply of oxygen accumulation by various parts of the brain. These scientists conduct brain scans while patients are doing certain assignments hoping to establish the areas of the brain that are less or more responsive during the performance of the task. Investigators have made substantial advancements in the last few years in understanding how thinking problems evolve and also in the treatment strategies to lessen the effects. Cognitive developments are very individual and different from those that occur with Alzheimer’s disease. Multiple Sclerosis usually affects a few distinct functions rather than universally damaging all intellectual abilities. The reductions in cognitive functions include visual perception problems, troubles with word-finding, a decrease in the speed of processing information, memory, attention difficulties and lowered planning and prioritizing abilities.
The National MS Society funded a research program that discovered evidence linking depression to loss of brain mass in a distinct area of the brain that is noted to be significant in memory, the “hippocampus”. Stefan M. Gold, Ph.D. (University of California, Los Angeles) and colleagues address their results in Biological Psychiatry. These researchers also found that abnormal secretions of the stress hormone cortisol also associate with loss of brain tissue. These findings display a need for ongoing studies to evaluate any causal effects and are relevant indications to a symptom that interferes immensely with the quality of life of those diagnosed and they also suggest that this reduction or shrinkage may be counteracted by treating the depression.
Future Research involving Multiple Sclerosis
There is compelling, convincing evidence that cognitive training enhances memory and learning. Scientists at the Kessler Foundation in New Jersey announce their findings of a clinical trial showing that a distinct kind of memory exercise enhances learning in those with MS for six months after the treatment ends and improves their quality of life. The findings are the same as those found with previous reports implying that cognitive training improves not only a particular ability but extends onto repairing other symptoms such as depression, fatigue, and feelings connected with the overall quality of life. This controlled trial furnishes significant evidence that cognitive training can enhance memory and learning in those diagnosed with MS, and hopefully will aid in the promotion of the benefits of cognitive training to be covered by insurance companies. Continuing research in this area will improve the understanding of which individual will benefit the most along with the best kinds and length of therapy needed to cultivate success.
Scientists, from the University of Washington in Seattle, have joined with scientists from the State University of New York at Buffalo and the University of Illinois Urbana-Champaign to conduct a United States Multiple Sclerosis study. This National MS Society funded, controlled investigation is to assess the responses of aerobic exercise versus stretching and toning on thinking and cognition in those diagnosed with MS. The group will test the cognitive skills of the person in the study before the exercise begins, at the end of the six-month exercise schedule, and three months after the study is complete. They are wondering if aerobic training or toning and stretching exercises enhance cognitive functions or thinking abilities and if this change is present once the exercise program ends. Findings from this report could add significant proof for a non-pharmaceutical therapy recommendation for repairing cognitive abilities.
Many organizations offer various services with the aim of providing aid for those diagnosed. For example, the National MS Society assists patients in locating others that have the illness in their area and find support groups or nearby counselors. The Cleveland Clinic Mellen Center for Multiple Sclerosis provides free podcasts during which people can engage talk with trained experts that address common concerns, and those participating can ask personal specific questions. The Multiple Sclerosis Foundation has funding programs in which people can apply for free or lower health care costs from attending physicians, available health appliances, and at times provides monetary help for average costs of living.
Tips for Living with Multiple Sclerosis
Mary Rensel, MD, is a neurologist at the Mellen Center for Multiple Sclerosis Treatment and Research at the Cleveland Clinic in Ohio. She states that “There’s no particular diet for MS, but they recommend anti-inflammatory foods meaning fresh fruits, vegetables, whole grains, and healthy oils” because Multiple Sclerosis is an inflammatory condition. Research regarding dietary recommendations is an ongoing process and continues to be a focus of scientific inquiry.
Weekly Physical Exercise
Researchers in Australia examined 121 people with MS and compared those who exercised and published their results in the journal Health Quality of Life Outcomes. To reduce fatigue, anxiety and depression 30 minutes of moderate physical activity such as swimming or walking twice a week can improve these symptoms.
Regulate Vitamin D
There have been reports throughout the scientific literature between low vitamin D levels and MS because sometimes energy levels improve and pain decreases with increasing intake. Dr. Rensel from the Mellen Center for Multiple Sclerosis regularly tests for this micronutrient recommending supplements to people who are lacking adequate amounts.
Live a Smoke Free Life
Scientists from New York State University published in the journal Neurology state that cigarette smoking is one of the environmental factors strongly tied to risk factors concerning multiple sclerosis. Although the underlying mechanisms involved are unknown continuing to smoke once someone has the diagnosis seems to increase brain damage.
Practice Stress Reduction Techniques
People diagnosed with MS often and understandably feel enslaved in the vicious cycle attempting to manage symptoms. The accompanying associated stress worsens the condition often causing depression. Learning to perform stress management techniques such as asking for assistance, learning to prioritize, effectively managing time and practicing yoga, meditation, mindfulness, deep-breathing or relaxation exercises should be part of the daily routine.
Strive for Adequate Sleep
The Journal Clinical of Psychiatry published that nearly half of those with multiple sclerosis also have disturbances in sleep. Fatigue is a hallmark symptom that continues to be a focus of ongoing study.
Discuss MS with your Family
Open communication helps ease fears, answer questions, relieves feelings associated with isolation and helps family and friends become aware of how you feel. One important area worthy of discussing is talking to your children about the physical and emotional effects of MS and how this may relate to the household and daily life activities.
In conclusion this life-long often disabling affliction affects the optic nerve, spinal cord and brain, specifically, the central nervous system (CNS). Initial symptoms may be mild, such as a slight lack of sensation in the arms, or severe, such as numbness or a slight impairment in vision to blindness. The advancement, severity, and symptoms vary from person to person. At present, cutting edge therapies and advancements in research provide new expectations & hopes for those affected by the condition.
Health Psychology is intended to assist loved ones, family members, friends and those diagnosed with adjust to the management and process of this fluctuating and progressive illness. Family members and those afflicted often find the symptoms of this disease difficult to understand along with feeling that their goals, dreams, and hopes for the future will need periodic adjustments. Everyone influenced by this illness may react in various ways before accepting the disease, such as having symptoms relating to denial, anger, anxiety, grief, hopelessness, numbness, depression along with intermittent suicidal thoughts and intentions. For online support at Healthline http://goo.gl/izmz80
Health Psychologists can help by examining fears, setting appropriate goals, promoting maximum health expectations, discussing the ways to reduce the frequency of exacerbations, teach relaxation methods, reduce if not eliminate depressive symptoms and above all help those altered by the diagnosis live a useful, quality filled, well-rounded life.
Health Psychology for Everyday Life the book
Cheryl Ann MacDonald Psy’D
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