Expiration date: March 1, 2003
Lorraine Denis, RN, BSScN
Heather MacLean, MD, FRCPC
MS Clinic, Ottawa Hospital - General Campus
Serono Symposia International
This program will provide physicians, nurses, pharmacists and other allied healthcare professionals with practical and relevant information on the psychosocial implications of multiple sclerosis.
Multiple Sclerosis (MS) is the most common neurological disorder affecting young adults in the world. Because the average age of onset is 29, MS strikes during one’s most productive adult years and thus has many life implications.
Obviously, many of life’s decisions are similar among those with and without MS. Decisions include whether to marry, when to marry, whether or not to consider starting, changing or stopping careers, if and when to have children, how to cope with caring for a young family, and how to plan financially for the future. But because MS is a chronic disease with physical, cognitive and mood effects, foreknowledge of the diagnosis will lend an added dimension to the decision-making process.
Although there are currently several disease modifying agents that slow the course of MS, to date there is no cure. Thus MS is a chronic disease. One of the most disturbing features of this disease to patients is its unpredictability. MS attacks may strike at irregular intervals, with varying symptoms and at varying intensities.
When faced with the diagnosis and its implications, patients often experience a grief reaction -- a sense of loss -- as a self image of health, independence and control are abandoned.
Psychosocial Adjustment To MS
The physiological reaction to the news of MS can be agonizing for many newly diagnosed individuals. Feelings of nervousness, doubt, confusion are only a few of the possible emotional responses that may be experienced.
Many individuals in the early stages of disease experience full and lasting remissions after their first relapse. Rationalizing that the diagnosis was made in error becomes plausible under these circumstances. Denial is more commonly seen in early MS but can be a prolonged emotional reaction in some people. Failure to work through this stage will only prolong the time necessary to reach acceptance of loss.
One of the greatest challenges to individuals with MS is its unpredictable nature. Not knowing if the disease will progress or what areas of the body will be affected can be very frightening.
Anger is a very common response to any loss. Being able to recognize these feelings and finding an appropriate outlet to express them is important. Speaking with a close friend or counselor may be indicated.
Acceptance can only be achieved when MS is incorporated into the life of the family unit. It is necessary to make allowances for MS, but MS should not rule all individual and family activities.
Effects of MS
Effects of MS can be categorized as either psychological (those pertaining to the mind and emotions) or social.
Illustrated is a flow diagram of the major topics to be covered in the upcoming slides.
Psychological effects involve not only one’s perception of oneself, but MS has clear associations with disturbances in memory and other higher mental functions, as well as with certain psychiatric disorders.
Once the diagnosis of MS is raised, the perception of oneself as being “healthy” is now distorted. Often there arise legitimate concerns with regards to the future and one’s ability to maintain a sense of physical and financial independence and one’s ability to provide for a family. Certainly, with the uncertainty and unpredictability that comes with this diagnosis, there is a sense of loss of control.
Although MS was once thought to be purely a physical disorder, sparing higher cognitive functions, it has become increasingly clear that this is untrue. Not only do cognitive changes occur in MS patients, they are common. It is estimated that 40 - 70% of patients with MS experience cognitive changes.
Because the cognitive effects of MS are often mild, they have only been very recently studied in depth. The chief disturbances occur with short-term memory and concentration. These likely arise from demyelination in the subcortical white matter that impedes the normal volleys of axonal impulses between and within the cerebral hemispheres that are required for these mental tasks. Consequently mental tasks often require more time than usual. Although treating physicians, friends and family members may be unable to detect the changes, patients themselves often complain, even early on in the course of their disease, that their memory has declined, that mental tasks are more difficult and they quickly tire during mentally-taxing tasks.
It has been shown with formal neuropsychological testing that upwards of 50% of MS patients have some form of cognitive decline (Van Den Noort, et al. 1999, Rao SM. Neuropsychology of multiple sclerosis. Curr Opin Neurol 1995 Jun;8(3):216-20.). As mentioned, short-term memory is chiefly affected. Patients demonstrate slowed retrieval of formed memories and often require cueing. For this reason, patients often rely on lists, daily journals and appointment books more and more for day to day activities. This slowing is characteristic of subcortical dementias in which disease processes largely affect the white matter of the brain or the deep grey structures such as the basal ganglia.
There are occasional examples of patients that are severely cognitively affected. It is in these more severe cases that the patient’s insight into the degree of impairment is often poor. Although on MRI there is often extensive demyelination and global cerebral atrophy, surprisingly patients can have relatively little physical disability. Fortunately, severe cognitive impairment on the basis of MS alone is relatively uncommon (5-10% of patients).
A study of cerebral atrophy in patients receiving Avonex® has demonstrated a delay in atrophy development suggesting that not only do disease modifying agents delay physical disability, but they may delay cognitive dysfunction as well (Rudick RA, Fisher E, Lee JC, Simon J and Jacobs L. Use of the brain parenchymal fraction to measure whole brain atrophy in relapsing-remitting MS. Multiple Sclerosis Collaborative Research Group. Neurology 1999, 53(8): 1698-1704.).
Concentration & Attention
Processes that require sustained attention and mental manipulations can cause mental fatigue with MS patients. Patients do better if they divide tasks up into multiple stages and take short mental breaks between each stage.
Similarly, while previously being able to juggle several tasks at once, MS patients often describe the loss of this ability to tackle more than one problem at a time. Again, patients learn to cope by prioritizing tasks and handling them in succession rather than simultaneously.
A common complaint among MS patients is one of an impairment in word-finding. Word-finding is traditionally described as a cortical function performed by Broca’s area in the dominant frontal lobe. Words are described as being “on the tip of my tongue.”
Likely, this physically arises from demyelination in the white matter underlying the cortical speed centres that slows afferent and efferent impulses.
Because MS pathology is largely in the periventricular white matter, and the frontal lobes are the largest lobes in the brain and have the bulk of the white matter, functions carried out by the frontal lobes can be affected to some degree. Frontal lobe functions are those often described as the most “human”; reasoning, problem solving, abstraction and the ability to shift logic appropriately as new stimuli are presented.
Mood may be affected in MS by reactive processes related to the stress of the diagnosis or the stresses of other implications of MS on one’s lifestyle, or it may be affected on an organic basis as there are clear neuroanatomical and neurochemical correlates to mood.
The effects of MS on mood cannot only be categorized as mood disorders (depression with and without suicidal ideation, anxiety, and bipolar affective disorder) but there are other sometimes more subtle and less disruptive mood changes that are common among MS patients (emotional lability, disinhibition, and reactions to stress).
Unipolar depression is one of the most commonly encountered psychiatric disturbances in the general population. Patients with superimposed medical illness, including MS, have even a higher rate of clinical depression. Unfortunately, this entity often goes undiagnosed, despite its occasionally devastating impact on daily life. Often the symptoms of depression are incorrectly attributed to MS itself (fatigue, reduced activity, poor concentration, etc.).
Once identified, however, current treatments can make a dramatic improvement in quality of life. Perhaps the most widely used medications for depression today are the SSRIs. They have the advantages of ease of dosing, relative tolerability and low toxicity in overdose. The choice of SSRI should be guided by the patients age, coexisting medical problems, medication interactions, and the drug’s side effect profile. For patients with disrupted sleep, the more sedating SSRIs, paroxetine (Paxil®) and fluvoxamine (Luvox®) may be most appropriate. Elderly patients, however, often cannot tolerate paroxetine due to anticholinergic cognitive side effects. Patients suffering from prominent fatigue may alternatively benefit from the more activating fluoxetine (Prozac®) or sertraline (Zoloft®). Atypical antidepressants, venlafaxine (Effexor®) and bupropion (Wellbutrin®) are felt to cause less sexual dysfunction and gastrointestinal (GI) distress than the SSRIs.
Depression has been suspected as a side-effect of interferon treatment. In the pivotal trial using Betaseron® a higher proportion of depression and suicide attempts occurred in the treated trial arms than in the placebo arm (The IFNB Multiple Sclerosis Study Group and the University of British Columbia MS/MRI Analysis Group. Interferon beta 1b in the treatment of multiple sclerosis: final outcome of the randomized controlled trial. Neurology 1995;45:1277-1285.). Conversely, analysis of data from the European Study Group using Betaseron® for secondary progressive MS, the PRISMS study using Rebif®, and a 2 year trial of Avonex® for relapsing-remitting disease all failed to support increased rates of depression in treated patients compared with placebo (European Study Group on Interferon beta 1b in Secondary Progressive MS. Placebo-controlled multicentre randomised trial of interferon beta 1b in treatment of secondary progressive multiple sclerosis. Lancet 1998, 352: 1491-1497. PRISMS Study Group: Randomised double-blind placebo-controlled study of interferon B-1a in relapsing-remitting multiple sclerosis. Lancet 1998, 352: 1498-1504, Patten SB & Metz LM, Interferon beta-1 a and depression in relapsing-remitting multiple sclerosis: an analysis of depression data from the PRISMS clinical trial. Mult Scler 2001 Aug;7(4):243-8, Jacobs LD, Cookfair D, Rudick RA et al: Intramuscular interferon Beta-1a for disease progression in relapsing multiple sclerosis. Ann Neurol 1996, 39(3): 285-294.). Several arguments against a true cause and effect relationship between interferon treatment and depression have been made. First, interferon can produce side effects that mimic depression: fatigue, malaise, asthenia. Second, interferon can alter thyroid function which can be mistaken for depression. Last, patients starting interferon treatment are prone to unrealistic expectations in terms of disease modification. If attacks and disease progression continue despite treatment, discouraged mood is common. If depression occurs with interferon treatment, discontinuation of disease modifying therapy is not the preferred initial management. Patients are often reluctant to abandon a proven effective treatment once begun. It is advisable to treat depression during interferon therapy as it would be treated otherwise, with antidepressant medications and brief psychotherapy.
As with depression, there exists a significant comorbidity between MS and anxiety disorders. Unlike depression, in which the diagnosis and severity have been weakly associated with lesion burden on MRI, the presence and severity of anxiety appear unrelated to lesion burden. It is therefore postulated that anxiety may be more of a reactive process in response to the psychosocial pressures of this chronic disease.
The types of anxiety disorders that may occur include panic disorder, generalized anxiety disorder, adjustment disorder with anxious features, obsessive compulsive disorder and social phobia among others.
SSRI’s have a beneficial role in a variety of these disorders. A short course (less than 6 weeks) of benzodiazepines may be appropriate in patients with acute situational anxiety and adjustment disorder.
Bipolar Affective Disorder
The international prevalence of bipolar affective disorder is only about 1%. Prevalence in the MS population is only marginally higher than this. Although the age of onset can be from childhood to age 50, most patients become symptomatic in their late teens and early 20’s. Periods of depression may be the initial presentation, but later patients develop episodes of elevated mood, grandiosity, racing thoughts, speech and hyperactivity. During manic phases, insight and judgment are impaired.
The choice of acute treatment is influenced by the presenting symptoms; depression, mania or the presence of psychotic symptoms. Mood stabilizers are effective as long-term prophylaxis against further episodic depression or mania. Lithium is commonly used, but other mood stabilizers in the anticonvulsant class (carbamazepine (Tegretol®), valproic acid (Epival®), gabapentin (Neurontin®), and lamotrigine (Lamictal®)) are also effective.
According to epidemiological studies, suicide rates in MS patients are 7.5 times that for the general population (Sadovnick AD, Eisen K, Ebers GC, Paty DW. Cause of death in patients attending multiple sclerosis clinics. Neurology 1991;41:1193-1196.). It is critical that physicians recognize the warning signs and risk factors as, in many instances, suicide can be prevented.
Warning signs include not only symptoms of depression, but thoughts of death and preparation for death are often prominent. This includes activities such as making a will, getting one’s affairs in order, and unexpectedly visiting old friends and relatives.
The risk of completed suicide is higher in males, perhaps because more violent means are used. In general, suicide rates increase with age. Geriatric suicides are common. Furthermore, risk increases if one is single, divorced or has lost a spouse to death, if one has few friends or family members, if there is a loss of a loved one or the loss of employment.
Emotional lability is a common symptom in the MS population although it can be seen with other neurological diseases such as brainstem stroke and amyotrophic lateral sclerosis (ALS). Patients are prone to episodes of involuntary laughter and crying, and shift from one to the other within short periods. Often patients find that their underlying emotions are not as intense as would be anticipated given their expressions. This suggests a reduced threshold for expressing emotions and results when there is a lack of inhibitory control of these emotional “reflexes.” It is often seen with demyelination in the brainstem that interferes with descending inhibitory influences. Because of the brainstem involvement, this lability is often termed “pseudobulbar palsy,” and may coexist with other brainstem symptoms such as dysphagia and dysarthria.
Although suppression can be difficult, some anecdotal success has been achieved with tricyclic antidepressants.
As with cognitive disturbances, disinhibition is attributable to frontal lobe dysfunction. Because the frontal lobes are so large and contain a large volume of white matter, disinhibition is usually a late phenomenon in MS, occurring only after extensive frontal white matter demyelination.
Symptoms include impulsivity, outspokenness and lack of social awareness in terms of appropriate behaviours.
During an MS attack, many patients feel significant external pressure and a common question is “Did stress bring on this attack? And can stress worsen my disease?”
In the laboratory, there appear to be complex, poorly understood interactions between immune cells and neurotransmitters. Thus a biological basis for stress worsening autoimmune disease would be plausible. However, when studied clinically, no clear relationship between acute stress and either the onset of disease or the occurrence of attacks has emerged.
Studies looking at the effects of chronic stress on the course of MS are lacking.
Being diagnosed with a chronic disease such as MS and dealing with the challenges that are inherent have an impact on daily life. Most obvious are the physical challenges associated with a physical disability. Less obvious is the profound influence of invisible disability, namely the impact that fatigue has on life.
Employment is frequently affected by the presence of chronic disease and disability. This in turn affects income status. In later slides, employment issues will be addressed including those present when applying for a job, when MS arises during gainful employment, and issues surrounding insurance.
Even the most basic of daily events such as social interactions with friends, coworkers and family, recreational outings and driving are affected. These issues will also be discussed.
Lastly, the effects of MS on the marriage, family unit and family planning will be explored.
Most individuals with MS will experience some form of disability at one point or another during their disease process. This disability will abate completely or partially in those who have relapsing/remitting disease. In either case it is important for your patient to feel that he/she is in control of their life and not let such disabilities take over life’s plans.
Physical medicine, physiotherapy and occupational therapy can offer much to assist individuals with MS to continue their participation in the activities that engaged them before the onset of physical changes. An ergonomist can assess an individual’s work environment and recommend adaptive changes to assist continued contributions at work.
Attitude towards physical changes can be as disabling (if not more disabling) than the physical change itself. Subjective findings are those changes that your patient will report, which are often greater in magnitude than the objective findings a neurologist will detect. This is especially true with fatigue in MS.
Patterns of physical disability vary between patients and within a single patient over time depending on what areas of the central nervous system (CNS) have been affected by demyelination. A detailed neurological history and examination are required to fully assess a patient’s disability status. In addition to a routine examination, a patient’s performance on a 500 meter walk is informative. Generally, one should be able to complete 500 meters without aid or rest. If the patient is unable to complete this task, they are considered to have at least moderate disability (greater than EDSS 4.0). Please refer to the following slide for EDSS details.
Expanded Disability Status Scale
Physical disability is measured using several scales. The most used is the Expanded Disability Status Scale (EDSS) developed by Kurtzke in 1983. It is a numerical scale from 0 to 10 in 0.5 increments. The higher scores indicate higher disability.
Most patients with EDSS scores of 3 or lower have little obvious physical disability and a proper neurological examination must be performed to fully recognize the patient’s deficiencies. At EDSS’s of 6 and higher, disability is visibly obvious as patients require ambulatory aids for mobility.
One shortcoming of this system is that it is not linear. It takes relatively more disability to move up on the scale at the very high levels compared with the lower levels. Another is that the Kurtzke scale is weighted for picking up ambulation disability. Less emphasis is placed on upper extremity dysfunction or cognitive dysfunction. Lately there have been attempts to create a new scale that is more comprehensive. (Note: the half point increments at lower EDSS scores were omitted in the table for brevity.)
Fatigue is described as a general sense of physical tiredness and lack of energy that is greater than would be anticipated for the degree of physical effort expended. It is distinct from apathy associated with depression and distinct from muscular weakness. Fatigue is now recognized as one of the most common symptoms of MS. Surveys and case control studies indicate that 75 to 95 percent of MS patients experience fatigue at some time during their course. 50 percent report fatigue as one of their worst problems (Van den Noort, 1999, Fisk JD, Pontefract A, Ritvo PG, et al. The impact of fatigue on patients with MS. Can J Neurol Sci 1994;21:9-14, Multiple Sclerosis Council for Clinical Practice Guidelines. Fatigue and Multiple Sclerosis: Evidence-based Management Strategies for Fatigue in Multiple Sclerosis,” 1998, Paralyzed Veterans of America.). For many, even with little physical disability, it is the most devastating symptom of this disease.
The physiological basis of fatigue is unknown. There is evidence of a central reduction in motor drive and cerebral glucose metabolism which may underlie this symptom. A peripheral basis within muscle as well as cytokine and humeral causes have also been postulated. MS fatigue needs to be differentiated from other medical illness such as anemia or hypothyroidism. It must also be differentiated from sleep disorders and depression.
Non-pharmacological measures can be tried initially. These include taking frequent breaks, napping and prioritizing tasks. If medications are indicated, amantadine is often first-line. Pemoline has been used in the past but cases of delayed hepatotoxicity have been reported. Modafinil, used in narcolepsy, is starting to be used in MS with promising results. Fluoxetine, used in depression, has activating properties and may benefit those with coexisting depression and fatigue.
Seventy-five percent of patients with MS are employed at the time of diagnosis, but only 30-40% of people with MS remain in the work force (Nelson, R. MS: It's Impact on Employment. Presentation given in Ottawa; November 2000). It is generally not necessary to disclose having MS if there is little outward evidence of the disease and there is no doubt that he/she can meet the challenges of the job. Employers are not permitted to inquire about medical history unless there are specific physical demands involved in the work. In this case it is not uncommon for a prospective employee to be required to complete a health questionnaire and undergo an independent medical evaluation. If insurance forms require similar disclosure it is best to provide all relevant information.
Most patients fear losing their jobs or being passed up for a promotion
because they have MS. Problems often arise when an individual tries to
maintain a deceptive front. In most cases it is often easier to work out
any necessary accommodations in a climate of openness and trust.
Most employer fears arise out of ignorance of the disease. Fear of future absenteeism, drop in productivity, increase in overall group plan rates may all be unfounded if the work environment is supportive to the employee with MS.
Social action efforts and legislation have improved accessibility for the disabled but much work is left to be done. Employers should be careful that offices, furniture, equipment, elevators, bathrooms, computers, room temperature can be adjusted to each individual.
The major predictors of job loss in MS are mobility and cognitive impairments and jobs requiring physical exertion and cognitive impairments. False pride may keep some patients working beyond a time when they should be. There may come a time when fatigue and difficulties struggling to work everyday can become detrimental to a patient's health. If your patient is considering going from full-time to part-time work, they will want to ensure that they are not losing their benefits such as drug plans, short and long-term benefits. It is often better to remain part-time in the workforce and claim part-time benefits than to go on full-time disability.
Since MS develops during the most productive years of an individual and family’s life it stands to reason that if an individual must withdraw from the work force temporarily or permanently that this will have a financial impact on the family unit. If your patient was employed and covered with short and long-term disability benefits as well as a drug plan the degree of financial burden will be less than if they were a contract worker without any form of benefits.
Your patient would be wise to seek opportunities to access coverage by such benefit plans early. Some employers are open to the possibility of part-time work combined with partial compensation from a disability plan. This arrangement allows the individual to remain in the work force and to make a professional contribution to society and to pace themselves by taking time off at strategic periods through the week.
If it is imperative for your patient to leave the workforce permanently or for a prolonged period their income might be made up of a combination of employer funded disability payments, privately purchased disability income payments, Canada Pension Plan (CPP) disability payments or provincial disability payments (in Canada).
Not all individuals require life insurance. If your patient is single and doesn’t have dependents he/she might not require life insurance. If they do have dependents, he/she will want to consider applying for life insurance if it is not already in place.
Unfortunately the insurance industry continues to rely on outdated statistics to determine morbidity and mortality related to MS. The data used does not reflect changes brought about by a better understanding and management of the disease.
If your patient cannot obtain life insurance he/she may want to consult with a broker who can shop around for them or consider a policy for accidental death, a funeral expense plan, credit cards with accidental death coverage, a group insurance plan through an employer, or insurance provided through a professional organization.
Just as a family unit may come under strain from living with MS so too can friendships. Some friendships may not stand the test of MS while other friendships may grow closer. Only your patient will know when it is right to disclose their diagnosis. Most friends will notice a change in your patient’s behaviour and will grow suspicious if nothing at all is said. It may be very natural and tempting but care should be taken not to burden special friendships with negative emotions over a prolonged period of time.
Your patient may want to share MS facts with their closest friends. MS is a mysterious and often invisible disease and friends will have a better understanding and will be more tolerant to some of the changes your patient is experiencing.
Encourage your patient to accept help from friends when and if it is desired. This is not a time for your patient to be proud. Friends who usually want to offer assistance will feel helpless and shut out unless they can continue to offer help.
Recreation is the first thing to be dropped during periods of stress, time and budget restraints. Many will learn through experience that even though recreational activities can be dropped for an extended period of time that the lack of merriment through play can have devastating effects on an entire family system. You may recall having heard the expression “families who play together stay together.”
Life should not become so serious all of the time. Play should be given a proper position within a family unit. Perhaps the best way to do this is to budget family activities and to include periods of time during the week and weekend for playful activities so household and family maintenance tasks do not take over entirely. The positive experience of play will in time serve as its own reward and reinforcement.
Taking care to display a positive attitude will help all family members to enjoy these important occasions. Individuals who display a positive attitude often report some relief from physical ailments. Instead of focusing on loses in life it can be helpful for your patient to acknowledge those abilities that they do have. This often requires practice.
It will be necessary to consider individual abilities when choosing recreational activities as well as an appropriate environment in the event that the individual with MS is intolerant to excessive heat or physically challenging environments.
As adults we often take our right to drive for granted until our ability to do so comes under question. If you suspect that it is unsafe for your patient to be driving he/she should be reported to the local transportation office. You may also want to refer your patient for driving assessment. Often simple adaptations can make it possible for individuals with motor deficits to continue driving safely.
When one member of a family is affected by MS so too are all members. The affected individual may no longer be able to participate in his/her previously enjoyed activities which often changes the dynamics in a family. Responses vary from family to family just as each family is unique in their own way. Young children are often very sensitive to change and have a tendency to fear losing their parent in the face of illness. It is important to communicate with children and allow them opportunities to express their fears. Compromise from all family members is necessary to successfully adapt to the losses brought on by MS.
Marriage marks the beginning of a new life between two people. MS is insensitive to the particular stage of life that individuals may find themselves in. You should not be surprised to find yourself counseling a young couple who are only weeks away from a marriage date.
This can be a particularly sensitive and difficult time for two people. Many questions will occur to both parties as they both evaluate their individual and joint goals in life. This is no time to withhold the truth of MS.
The course of MS is unpredictable and this may launch both parties in the couple into some very heavy soul searching. Many couples will stand closer together as a result of this test to their unity. In any case you are available to provide unbiased and factual information. Remind them that the course of MS is rapidly changing with the introduction of disease modifying drugs.
Issues of pregnancy, employment, insurance and raising a family should be covered. By opening the doors of communication with your patient and his/her fiancé you are modeling the importance of discussing these and other issues for the future.
Problems with sexuality are a prevalent yet often overlooked phenomenon in patients with chronic disease. In multiple sclerosis, recent studies suggest that symptoms of sexual dysfunction are present in over 70% of cases (Zorzon M, Zivadinov R, Monti Bragadin L et al. Sexual dysfunction in multiple sclerosis: a 2-year follow-up study. J Neurol Sci 2001 Jun 15;187(1-2):1-5.). Although sexual dysfunction may occur at any stage in MS, the frequency and severity of symptoms correlate with both the level of disability and the presence of bladder dysfunction.
Although a central neurological cause may be at the root of some cases of dysfunction, there may be other confounding factors such as medication effects, fatigue and depression.
Family life can be challenging under most normal circumstances. Introduce a disease such as MS and many families will go through occasional periods of chaos.
Family members may have to enter the work force if the affected individual is the major income earner. This in itself can be stressful to a partner or young adult child as well as to the MS sufferer who formerly identified with his/her role as a financial supporter.
All family members must work diligently to promote the self-esteem of the affected individual as this individual must rediscover what activities are both realistic and satisfying to perform.
Role changes may occur gradually over time or abruptly as in the case of an acute relapse. Individual emotional responses vary from family to family member but may include anger, resentment, and guilt.
MS affects patients at the ages when they are planning a family or already have young children.
Several concerns that patients voice include… Will I pass MS on to my children? Will MS affect my ability to conceive a child? How will MS affect my pregnancy? How will pregnancy affect my MS? Lastly, how will MS affect my ability to care for my young children?
The answer to the first of these questions is complicated. Although there does appear to be a genetic component to the occurrence of MS, that component is quite small. Even sin identical twins who share identical genotypes, when one develops MS, the other has only roughly a 38% chance of developing the disease. When a parent has MS, the chance that a child will develop the disease is approximately 3-5%. This is obviously higher than the lifetime risk for the general population of 0.2%, but still the chances of it being passed on are very low (Data from the Canadian Collaborative Project on Genetic Susceptibility to MS.).
There likely are multiple susceptibility genes that are additive to create a person’s genetic risk of developing MS. Even then, at risk individuals need to be exposed to the right environmental trigger to culminate in clinical disease. Rarely, multiple members of a family develop MS, indicating high genetic loading of susceptibility genes in these families.
Fertility is largely preserved in MS. Apart from chemotherapeutic treatments that affect gonadal function the actual ability to conceive is unaffected.
More problematic are symptoms of sexual dysfunction affecting intercourse in both women and men. In women, the most common complaints are fatigue, decreased libido, decreased lubrication, loss of genital sensation and difficulty achieving orgasm. Other issues that may arise are apprehension with intercourse if patients suffer from poor bladder or bowel control and, in more advanced MS, patients with adductor spasticity of the legs.
Although men also suffer from fatigue, loss of libido and decreased genital sensation, the most common male complaint is that of decreased ability to achieve or maintain satisfactory erections.
Several different treatment options are available to address erectile dysfunction. The newest and perhaps most convenient is oral sildenafil (Viagra®), which acts in the penile vascular tissues as a vasodilator. If unsuccessful, injectable vasodilators such as papaverine or prostaglandins, or mechanical vacuum devices are possibilities.
MS usually does little to affect one’s pregnancy. One’s pregnancy, however, may actually have short-term beneficial effects on one’s MS.
Attack frequency has been observed to decrease during the 9 months of pregnancy, particularly in the third trimester. It was a long held belief, however, that for three to six months after childbirth patients were prone to a flurry of attacks at a dramatically heightened frequency. Recent data refutes this.
Earlier studies on the matter were retrospective and relapses were often not confirmed objectively. Thus dramatic differences between pre-pregnancy and postpartum attack rates may not have been accurate. In a recent prospective analysis, where attacks prior to and throughout the gestational period were confirmed by a neurologist, attack rates did decline by the third trimester, but postpartum there was no statistical increase in relapse rate over pre-pregnancy levels (Sadovnick AD, Eisen K, Hashimoto SA et al. Pregnancy and multiple sclerosis: a prospective study. Arch Neurol 1994;51:1120-1124.). This is encouraging to women with MS planning pregnancy and suggests the possibility of a protective effect of the last trimester with relapse rates returning to baseline postpartum rather than being dramatically increased.
Nevertheless, most studies agree no matter what the immediate effects are, over a patient’s lifetime, pregnancy seems to do little in altering the long-term course of MS.
Medications in Pregnancy
Certain cautionary advice should be made to patients who are planning pregnancy. Certainly chemotherapeutic agents have caused fetal malformations and are not recommended during pregnancy. In addition, all disease modifying agents currently approved for relapsing remitting MS have unknown effects on a developing fetus. In animal studies, an increase in spontaneous abortion rates were seen with these agents. It is therefore advised to use contraception when taking these medications, to discontinue these agents several months before conception, and to remain off these drugs until breast feeding is completed.
When MS attacks occur during pregnancy, steroids can be used but benefits must be weighed against risks. It is felt that steroids do not alter the final outcome from an individual attack but only shorten the duration of attack symptoms. The relief of these symptoms must be weighed against potential fetal harm by way of maternal hyperglycemia, hypertension, bony effects and possible teratogenic effects on the fetus.
As with pregnancy itself, the process of childbirth is usually unaffected by MS with few exceptions. There is no increase in miscarriage, stillbirth, labour or delivery complications and no increase in fetal malformations from MS. Patients may tire more easily during labor, however. Therefore, epidurals are often helpful to conserve energy until active pushing is required.
Both the individual with MS and the caregiver should decide what tasks in the household and in their personal lives should be addressed on a daily, weekly and monthly basis. Through the process of negotiation, tasks can be assigned according to interest and abilities. In some cases the individual with MS may be unable to contribute much by the way of physical help in the household. This can increase the demands on the caregiver.
Caregivers need to take care of themselves. During difficult times many caregivers may neglect their own health. Their sleep may be regularly disrupted, they may not find the time for exercise, proper nutrition and may neglect their own social needs. Caregiver stress can be said to be related to the perceived lack of control over their own life and time rather than to the needs of the individual with MS.
The caregiver must remember that asking for help is not a sign of personal weakness or failure. If feelings of anger surface they should be expressed in an appropriate manner. Support groups or counseling can be helpful for both the individual with MS and the caregiver when emotions get out of hand. Respite should also be considered. Under no circumstances is abusive behaviour from either partner acceptable.
Finally, it is important to show each other how much you appreciate each other’s actions and efforts.
© Copyright 2001, Serono Symposia International