Cover Story: Finding Direction When Newly Diagnosed
By Susan Wells Courtney
An overview of the many factors involved
with a diagnosis of MS and information
to help with making choices
Most individuals who have been diagnosed with MS often talk about the confusion around their initial symptoms, and the long period of waiting for an answer. Once the diagnosis of MS is confirmed, this typically creates more confusion… and countless questions. The purpose of this issue’s cover story is to explain the basics behind MS, as well as treatment options, details on some of the more challenging symptoms, employment issues, and government programs. At the end of the article, readers will find a list of resources for more information.
Although many readers of The Motivator may no longer be considered newly diagnosed, and much of the information may not be new to them, they may find that certain details are of help, including the employment or government program information, as well as the list of resources. Additionally, this article is a good reference for people to share with relatives and friends who may be unfamiliar with MS – and much of the information may help those relatives and friends to better understand the difficult challenges faced by individuals with MS.
What is MS?
Multiple sclerosis (MS) is a disease of the central nervous system (CNS), consisting of the brain, optic nerves, and spinal cord. With MS, areas of the CNS become inflamed, damaging the protective covering (known as “myelin”) that surrounds and insulates the nerves (known as “axons”). In addition to the myelin, over time, the axons and nerve cells (neurons) within the CNS may also become damaged. MS is thought to be an autoimmune disease, where the body’s own white blood cells become misdirected and attack the body’s myelin and axons.
Who gets MS?
Most people with MS experience their first symptoms and are diagnosed between the ages of 15 and 50, although individuals of any age, including children, may be diagnosed with MS. Women are three times more likely than men to develop a relapsing form of MS. Geographically, people who live farther from the equator (in more temperate climates) have a higher risk of developing MS than people living in hotter areas near the equator, or in very cold areas near the north or south poles. The degree of risk associated with where someone lives as a child will remain throughout his or her life. More prevalent among those of northern European or Scandinavian ancestry, Caucasians have a higher incidence than those of African or Hispanic heritage to develop MS.
Is MS Contagious?
MS is not contagious, nor is it hereditary. However, MS susceptibility is increased if a family member (blood relative) has MS. The average risk of developing MS in the United States is one in 1,000, or one-tenth of one percent. For first-degree relatives (such as a child or sibling), the risk increases to three or four percent. This is not true for adopted children or half siblings (who do not share the same parent who has MS), whose risk is the same as unrelated individuals. With identical twins, if one twin has MS, the other’s risk is about 30 percent; non-identical twins’ risk is equal to other siblings.
What are the Possible Causes of MS?
Researchers have studied a variety of possible causes for multiple sclerosis (MS), and a combination of factors appears to be involved. A popular theory looks at commonly known slow-acting viruses (one that could remain dormant for many years), such as measles, herpes, human T-cell lymphoma, and Epstein-Barr.
Genes have some role in susceptibility to MS, but the exact mechanisms remain unclear. Additional theories include nutritional factors (such as fat intake as well as deficiencies in fish oil and Vitamin D), cigarette smoking (increasing MS risk and worsening disease activity), and the interactions of bacteria that live in the intestines (referred to as “gut microbiota”), among others. Certain parasites may be a possible risk-reduction factor in the development and severity of MS.
How is MS Diagnosed and Disease Activity Evaluated?
Diagnosing and evaluating MS disease activity is most reliably done by neurologists through a neurological history and examination. Tests that can indicate MS and rule out “MS mimickers” (other diseases that resemble MS but have other causes) are also performed. Lesions (areas of inflammation and myelin damage in the brain and/or spine) may be viewed on a magnetic resonance imaging (MRI) scan. Inflammation can be better evaluated with gadolinium (or contrast) enhancement – a type of dye given to the patient via injection prior to the procedure.
Test results can also help determine the effectiveness of a disease-modifying therapy (DMT), or to get an “inside view” of a patient’s disease status. Other tools sometimes used for an MS diagnosis are lumbar puncture (spinal tap) and evoked potential (EP) tests, measuring nerve response.
Multiple sclerosis (MS) affects each person differently. The most common types of MS are:
- Relapsing-Remitting MS (RRMS)
- Secondary-Progressive MS (SPMS)
- Primary-Progressive MS (PPMS)
Initially, most people with MS experience symptom flare-ups, which are also known as relapses, exacerbations, or attacks. When someone experiences a relapse, he or she may be having new symptoms or an increase in existing symptoms. These usually persist for a short period of time (from a few days to a few months) and afterward the person may remain symptom-free for periods of months or years. This type of MS is referred to as relapsing-remitting MS (RRMS). Approximately 80 to 85 percent of people with MS are initially diagnosed with this form of the disease.
Over time, RRMS may advance to secondary-progressive MS (SPMS). This form of MS does not have the dramatic variations in symptoms that RRMS does, but rather has a slow, steady progression – with or without relapses. If relapses do occur, they usually do not fully remit. Without treatment, approximately half of individuals with RRMS convert to SPMS within 10 years. However, with the introduction of long-term disease-modifying therapies (DMTs), fewer individuals advance to this latter form of the disease.
Individuals who are not initially diagnosed with RRMS may be experiencing a more steady disease progression. Approximately 10 percent of the MS population is diagnosed with primary-progressive MS (PPMS), where individuals experience a steady worsening of symptoms from the start, and do not have periodic relapses and remissions. This form is usually diagnosed in older people.
A small percentage of individuals are diagnosed with less-common forms of MS. While some disagreement exists regarding the terminology, these less-common forms include progressive-relapsing MS, fulminate MS, benign MS, and burned-out MS.
What is a Relapse?
Relapses, also referred to as exacerbations, attacks, flare-ups, episodes, or bouts, are initially experienced by most people diagnosed with multiple sclerosis (MS). Relapses occur with relapsing-remitting and sometimes secondary-progressive forms of MS, in which case both are considered “relapsing forms of MS.” Relapses do not occur with primary-progressive MS (PPMS), although people with PPMS may experience day-to-day fluctuations.
During a relapse, inflammation is occurring along the nerves and the myelin, causing people with MS to have a temporary worsening or recurrence of existing symptoms and/or the appearance of new symptoms. This can range from a few days in duration to a few months, followed by a complete or partial recovery (remission). Acute physical symptoms and neurological signs must be present for at least 24 to 48 hours, without any signs of infection or fever, before the treating physician may consider this type of flare-up to be a true relapse.
A pseudoexacerbation is a temporary worsening of symptoms without actual myelin inflammation or damage, brought on by other influences. Examples include other illnesses or infection, exercise, a warm environment, depression, exhaustion, and stress. When symptoms flare, checking for a fever is important, since even a minor infection and slight increase in temperature can cause symptoms to appear.
How Are Relapses Managed?
Relapses are usually treated with a high-dose course of powerful corticosteroids (a type of steroid) over a period of three to five days. These are given by intravenous (IV) infusion, administering the drug directly into the bloodstream for a quicker response. Some doctors prescribe oral steroids after the high-dose treatment, to ease the patient off of the medication. Another FDA-approved option is Acthar® Gel, which contains a highly purified form of the hormone adrenocorticotropin (ACTH). It is given once daily for two to three weeks and is injected either into the muscle or under the skin.
The Importance of Long-Term Treatment
Treatment with a long-term disease-modifying therapy (DMT) is crucial for most people with relapsing MS, as well as for some individuals with primary-progressive MS (PPMS), since disease activity and damage usually continue within the CNS even when no new symptoms are present. When a person begins a treatment regimen early in his or her disease course, disease activity is slowed for most individuals. This not only reduces the number and severity of symptom flare-ups, but also reduces the number of active lesions that appear on an MRI, as well as delays the progression of the disease (possibly delaying any related disability). Getting early treatment and staying on a DMT for MS may also delay the rate of conversion from relapsing-remitting MS (RRMS) to secondary-progressive MS (SPMS).
The FDA-Approved Treatments for MS
This chart includes the 15 DMTs currently approved by the Food and Drug Administration (FDA) for the long-term treatment of MS. Additional DMTs are likely to be approved by the FDA in the near future. All of these DMTs are approved for treating either relapsing-remitting MS (RRMS) or all relapsing forms of MS, which includes secondary-progressive MS with relapses. Ocrevus™ is the exception, which is also approved for primary-progressive MS. In addition, some of the DMTs have been approved for “clinically isolated syndrome” (CIS), which refers to a patient reporting one or more symptoms prior to a diagnosis of MS.
Talking to One’s Neurologist about Treatments and What to Ask
MSAA’s S.E.A.R.C.H.™ program is just one of several programs designed as tools for individuals with MS and their families to play a more active role in the successful management of their MS. Among the numerous questions to consider include: What are the therapies? Am I a candidate? What should I know about each one? How will my body react to taking one of these medications? How are the different medications administered? What about the costs or insurance? Once I have begun taking a DMT, how do I know if the one I am prescribed is working?
Another tool developed by MSAA is My MS Manager™, a free application for iOS and Android mobile phones and devices. This app helps individuals to track and record their medications, symptoms, and side effects, as well as create reports for their healthcare professionals.
Once a DMT is initiated, evidence has shown that treatment needs to be ongoing for benefits to persist. Non-adherence and gaps in treatment have been associated with an increased rate of relapses and progression of disability. Helpful strategies include: managing the side effects of the medications; understanding expectations of the DMTs by allowing six months to one year to see the effects; adjusting to a treatment by consulting an MS nurse or other healthcare professional with questions; and staying on schedule by setting reminders and keeping track of treatments through a written journal, electronic calendar, or phone app.
MS has the potential to cause several different symptoms and the specific symptoms each person experiences vary greatly. When experiencing one or more of these symptoms, individuals should consult their physician. Medications are available to treat many MS symptoms, which include over-the-counter drugs as well as prescribed medications. Diet, exercise, counseling, and lifestyle/wellness therapies, may also be helpful with managing certain symptoms.
MS symptoms are often compounded by extreme fatigue, which may be worse in the afternoon, sometimes relating to a rise in body temperature. Some symptoms may be temporarily increased by heat intolerance – a classic MS tendency – where a rise in temperature (internally or externally) causes a person to feel much worse. Energy, cognition, and strength can be particularly affected. Keeping cool through air-conditioning or various devices, including cooling apparel, is often helpful for people with heat-sensitive MS. Cooling accessories are available through MSAA’s Cooling Distribution Program to those who qualify, or these may be purchased through outside vendors.
When recovering from a symptom flare-up or learning to cope with a change in mobility, rehabilitation through physical therapy and occupational therapy can be of great value. Speech therapy, therapeutic exercise, and certain medical devices may also be useful in dealing with the symptoms of MS. Some of those who have a physically demanding or highly stressful job may choose to make a career change, in which case vocational training is helpful. Stress-management strategies can also assist.
When a family member is diagnosed with MS, participating in some type of counseling program is often of benefit to everyone involved. Individuals may be affected in different ways, both physically and emotionally. Seeking professional assistance can help.
A Discussion of the Emotional, Cognitive, and Psychological Symptoms of MS
While the physical symptoms of MS – such as changes in bladder function, spasticity, and mobility, for example – are greatly important and can impact one’s daily activities and lifestyle, these types of symptoms are more apparent, more relatable, and more tangible to care partners. Most physical symptoms have a variety of treatment options available, and for the most part, can be monitored and measured.
The emotional, cognitive, and psychological symptoms of MS, on the other hand, are not only quite challenging for both people with MS and those close to them, but they can also be very confusing for everyone involved. A variety of issues are possible, but some of the more common symptoms include anxiety, cognitive changes, depression, and pseudobulbar affect (PBA). Again, as a reminder, individuals with MS experience a variety of symptoms – and not everyone will experience these types of emotional, cognitive, and psychological changes.
Readers should keep in mind that everyone experiences changes in emotions at one time or another, as well as the typical “ups and downs” of everyday life. A tragic event may cause someone to feel sadness for an extended period of time, and stressful events can cause great anxiety until the problems are resolved. These are normal reactions from which most people recover and eventually return to their usual, healthy outlook on life. However, when someone experiences severe and/or prolonged depression or anxiety, possibly not related to any specific event or issue, professional help may be needed.
With MS, the rate of depression is three-times higher than the general population and it is also higher than with other chronic illnesses. Anxiety, too, is estimated to affect almost half of individuals living with MS and is typically undetected and untreated – more so than depression. The combination of heightened levels of depression and anxiety, if untreated, can even pose a risk of suicide in MS.
Pseudobulbar affect (PBA) occurs in 10 percent of people with MS, although some research suggests that a much larger number may be affected. It is characterized by sudden, uncontrollable expressions of laughter or crying without an apparent trigger, and also occurs in other chronic, neurological conditions. Fortunately, the medication Nuedexta® has been developed specifically to treat PBA.
While depression can result from the physical effects of MS within the nerves of the brain, or as with anxiety, it can be a natural byproduct of living with the disease, PBA is typically caused by physical changes in the brain. It is crucial to understand that individuals are not able to control such emotions and they should never feel ashamed or judged for experiencing them. The good news is that these symptoms are all highly treatable.
Emotional disturbances can cause significant pain and suffering, and lead to disruptions in family, work, and social life. Emotional disturbances can also impact roles and relationships, sexual function, and one’s self-image. Physicians, nurses, psychologists, and social workers who can identify, diagnose, treat, and manage these disturbances effectively are vitally important. These professionals can help their patients and family members talk about the emotional symptoms of MS – not just the physical ones. They encourage patients and family members to seek psychiatric and psychological treatment, which can have a dramatic, positive impact on the quality of their patients’ lives.
Cognitive changes with multiple sclerosis (MS) are also fairly common. Most studies state that approximately 50 percent of individuals with MS may have some type of cognitive dysfunction. Individuals with MS who experience cognitive issues may have trouble with functions such as attention, information-processing speed, executive functions (decision making), episodic memory, and visuospatial abilities. These deficits can affect several activities of daily living, including employment, driving, social integration, and adherence to medication regimens. Problems with concentration and the ability to shift attention are other examples of cognition impairments observed with MS.
Other MS symptoms can affect one’s cognition, including fatigue, problems in sleep management, and depression. The side effects of medication can also have an impact on cognition. Additional factors include anemia, infection, and thyroid problems. Various medications, including those used to treat Alzheimer’s disease, are being studied in MS, but so far, these have not shown dramatic results. Cognitive rehabilitation and retraining, as well as exercise, have shown to have a positive effect on cognition in MS.
A Discussion of the Invisible Symptoms of MS
Similar to the emotional, cognitive, and psychological symptoms of MS, the “invisible” symptoms of MS can be challenging and confusing to both individuals with MS as well as those close to them. Recognizing these symptoms, seeking treatment, and practicing effective strategies are key to coping well with these types of issues. To follow is a brief discussion of two of the more challenging invisible symptoms: MS fatigue and MS pain.
Coping with MS Fatigue
Fatigue has been described as an “overwhelming sense of tiredness.” Up to 80 percent of people with MS experience the disabling effects of fatigue and this can occur any time in the course of MS. Many people with MS find that fatigue increases as the day goes on, and worsens with a rise in body temperature, which might be caused by hot and humid weather.
As noted earlier, cooling technology can be very helpful to combat MS fatigue and other symptoms associated with an increase in temperature. However, cooling someone too quickly – such as taking cold baths or sitting close to the air conditioner – can cause shivering and vasoconstriction. This reaction does not help to alleviate MS symptoms. By slowly cooling down the body, which can be achieved through passive cooling garments, fatigue can be significantly reduced, helping a person with MS perform his or her daily activities.
Fatigue can be difficult for family members and friends to understand, because it is invisible to others. If fatigue is poorly understood, a person with MS who is experiencing fatigue might be characterized as “lazy.” Educating family, friends, and partners about MS fatigue is very important.
People with MS who experience fatigue often feel as though their “batteries have run low” after doing some of their daily activities. A brief rest often serves to recharge the batteries, so it’s possible to finish the task. Planning one’s activities in advance can help, such as trying not to go up and down the stairs more often than necessary, preparing meals in advance and freezing them for future use, sitting while performing household duties, and other types of energy conservation can help. Listing activities in their order of importance enables a person to see clearly what needs to be done first and what can wait until another day.
Coping with MS Pain
More than 50 percent of individuals with MS identify pain as a significant symptom. MS pain is mixed and may be divided into two different types. Pain from MS can be a direct result of damage to the nerves and is referred to as neurogenic. This type of pain may be intermittent or steady; spontaneous or evoked. Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen usually won’t work well on this type of pain. The over-stimulated nerves need to be calmed, and this may best be accomplished with anti-epileptic drugs, tricyclic antidepressants, and anti-spasticity drugs, to treat painful spasticity and spasms. Topical medications such as lidocaine gel or Zostrix® (capsaicin topical analgesic) may help reduce the burning and tingling.
A second type of pain is associated with living with disability and its effects. This is referred to as nociceptive. Caused by any mechanism that stimulates a pain response, it can be mechanical, thermal, chemical, or electrical. Examples of this type of pain include musculoskeletal pain, lower-back pain, painful spasms, pain related to urinary-tract infection, pain of pressure sores, and even pain associated with disease-modifying drugs.
Unlike neurogenic pain, nociceptive pain may respond to NSAIDs, which includes ibuprofen (Advil® and Motrin®). Tylenol® (acetaminophen) may help with this type of discomfort too. Antidepressants are sometimes effective and their function is twofold: they may help to shift the perception of pain, while also elevating one’s mood. Anti-spasticity medications may be used if spasticity and/or spasms are contributing to one’s discomfort.
Non-pharmaceutical approaches to pain include acupuncture, massage, tai chi, yoga, meditation, aquatic therapy, and physical therapy, among others. A physical therapist experienced with MS can be particularly useful in returning balance and good posture back to one’s movement. Warm compresses can sometimes loosen a tight muscle or reduce lower back pain, while an ice pack is normally prescribed for a recent muscle injury or injection-site reactions.
Miriam Franco, PsyD, MSCS, is a psychotherapist and psychoanalyst who specializes in working with individuals coping with chronic illness. She recently developed an app that focuses on relaxation and guided meditations for coping with the challenges of MS.
Dr. Franco explains, “First reactions can range from shock, disbelief, and anger, to fear and denial. These are all adaptive and predictable responses that you may experience initially. If you had to wait months or years for a definitive diagnosis after living with puzzling, unexplained symptoms, or if you doubted your perceptions, the diagnosis can bring some relief. This is especially true if you’ve been told ‘this is all in your head.’
“Most MS doctors are aware that individuals need time to grasp what is happening, to learn and understand what may be involved, and to find out about what treatment options are available. Time is needed to not only build a treatment plan, but to also develop trust and a supportive relationship with healthcare practitioners.”
Your family will need time as well to adjust to the diagnosis and people react to a diagnosis in different ways. Some want to learn everything they can about MS as soon as possible. Education can come in many forms, from informative websites, publications, and videos, to support groups, educational programs, and one-on-one discussions with your healthcare professionals. Be sure that you are keeping the amount of information at a reasonable level and are consulting reliable resources, such as MSAA or other major MS organizations.
While some want to get information, others may become upset and “turn off” at the idea of learning more about the disease. They know that getting MS is not fair, that it is not anyone’s fault, but they may still ask, “Why me?” Other common reactions are great concern and over-protectiveness. A spouse or parents (including a parent of an adult with MS) can often feel this way, and in their worry for your safety and health, may infringe upon your independence. Learning about the disease and having open communication about your symptoms, along with the precautions you are taking, can greatly help to reduce the anxiety that your spouse, parents, or others close to you may be experiencing.
Dr. Franco continues, “It’s important to keep in mind that if any of your initial reactions to having MS become unmanageable or too uncomfortable, you’ll find that much support is available. Major MS organizations such as MSAA provide resources for support, including helplines, educational videos and publications, and assistance with locating psychologists and social workers, who can help people cope with the emotions and stress of MS. Support groups can also be very helpful.”
Kathleen A. Taylor, PhD is a Professor in the Psychology Department and Chair of the Women and Gender Studies Department at the Sierra College in Rocklin, California. She is also a member of MSAA’s Healthcare Advisory Council.
Because MS has so many symptoms that may not be visible to another person, people tend to think that you don’t look sick, even when experiencing difficult symptoms. Often someone with MS may look fine, but he or she is unable to participate in everyday activities. Those around you may not understand or believe how ill you may be feeling and some may even feel resentful or angry that you are not doing your fair share of work around the house or on the job.
Dr. Taylor explains, “This can be particularly difficult for women due to gender stereotypes about women as non-rational or prone to hysteria. The very nature of MS in terms of ambiguity of early symptoms may play into these gender-biased notions about women’s ‘inherent’ emotionality, leading to the assumption that they are unreliable reporters of their own experience. Combine this with the tendency for women to emotionally take care of their loved ones, and this can become a significant issue.
It is essential to be frank about your symptoms and clearly define limitations. This can be difficult, but also expressing when one is having a ‘good day’ versus bad helps people understand that not all MS days are experienced in the same way.”
Particularly when not having a good day, or when experiencing a flare-up of symptoms, having plans in place for redistributing household duties is always a good idea. Knowing that your spouse and older children can pitch in with making a meal, shopping, laundry, and other responsibilities can help to provide some peace of mind. While care must be taken not to ask too much of your children, learning to help someone in need teaches children the importance of having empathy for others and looking beyond their own needs and wants.
In the book, Multiple Sclerosis: The Questions You Have, The Answers You Need (Demos Health, 2012), author Rosalind C. Kalb, PhD, points out, “As you confront the challenges of everyday life with MS and learn alternative ways to do things, you will begin to identify strengths and talents you never knew you had.” She suggests that as you give up an activity, experiment with others that may turn out to be equally satisfying.
Most importantly, find an aspect of yourself that MS is unable to touch, such as your sense of humor, religious beliefs, or love of music. This “MS-free zone” will help you to retain a sense of who you are, and can also be an important source of emotional energy. When feeling drained or overwhelmed by the challenges of everyday life, you can refuel by tapping into the things you enjoy through your MS-free zone.
Getting Help and Support
Kimberly Castelo, MS, LMFT, CST, CIIP is a Licensed Marriage and Family Therapist, Certified AASECT Sex Therapist, Certified Emotion Focused Couples Therapist, and Certified Integrated Intimacy Professional in Seattle, Washington. She is also an inspiring speaker at MSAA’s educational programs.
Ms. Castelo explains, “Individuals need to welcome any feelings that come. It is normal to feel like your emotions are on a roller coaster and you need to allow these feelings to surface. You also need to allow space for family members to be worried and concerned – they too need to adjust to the diagnosis. Family and individual counseling can be very helpful during this initial period. Individuals should also talk to their neurologist about fears, treatment plans, and even quality-of-life concerns.
“Do not isolate yourself… And don’t feel that you need to tell everyone about your diagnosis. Take your time sharing only with those you choose to tell. Be sure to set boundaries and to say ‘no’ when you find you are doing too much. You need to care for yourself, rest, or do things that are life-giving for you.”
Individuals also need to ask for help. Ms. Castelo inquires, “Why is asking for help so hard to do? Is it because we are told never to show weakness? Is it because we are having a hard time accepting help, and if so, why?” Take time to reevaluate what is stopping you from asking for help. Find that asking for help – even from people who you do not know well – is a strength! It is also a way to allow yourself to feel loved and cared for.
Ms. Castelo continues, “Withdrawing is very common when we are feeling overwhelmed. However, reaching out to others helps with our mood and outlook on life. While our tendency might be to withdraw, the goal would be to fight that urge and try something new. You’ll find that staying involved with others can add more happiness to your life. Try doing the kinds of things that you used to enjoy, such as going to a movie, or getting together with an old friend.
“Support groups are great! They help us feel like we are not alone. We can also learn about new ways of coping with MS that we hadn’t thought of before. In addition, we can meet new friends who we can connect with and expand our network of people with whom we can engage and share our thoughts.
“Look for a group where your voice can be heard and where you can learn from the others. Hopefully being heard and learning new ideas is what you can expect from every group. Take some time to decide if a group is right for you… because as with all relationships, getting to know the other members takes time. Give some time to find the rhythm of the group and how you might add to that rhythm.”
After diagnosis, many may question if they will be able to stay at their job – and some might immediately assume that they will need to discontinue their career. However, no one knows the course his or her MS will take, and particularly with today’s treatment options, many are experiencing fewer and less-severe relapses. Many find that they are able to stay at their job.
If and when symptoms interfere with one’s ability to perform a job, accommodations can frequently be made. These may include easy changes such as getting a closer parking spot or modifying one’s office space, or more significant modifications, such as changing one’s job duties and schedule. Various types of assistive technology are also available. However, accommodations must be reasonable, and not cause undue hardship to the employer.
The big question that individuals with MS are faced with is whether or not to divulge that they have MS to their employer and coworkers. They may feel that doing so will impact their relationships at the office. Fears may be that coworkers will treat them differently, that they may miss out on promotions, or that they may even lose their job.
The Americans with Disabilities Act (ADA) has been protecting individuals with disabilities from discrimination since 1990, and this has served to prevent people from wrongfully losing their job, being demoted, or taking a cut in pay. This law, which applies to employers of 15 or more people, also specifies that reasonable accommodations be made to modify one’s position, schedule, or work environment, to enable a person with a disability to continue his or her employment. Please note that state or local laws may apply to smaller companies, helping to prevent discrimination and allow for reasonable accommodations in those circumstances.
Under the ADA, people do not need to divulge their specific diagnosis. However, if an accommodation is needed, one needs to establish that he or she has a disability. A disability is an impairment that affects one or more major life functions such as sight, hearing, mobility, etc. If an accommodation is requested, the employer must determine whether or not the individual has a disability that would affect his or her ability to perform the job and requires some type of modification.
Sometimes medical documentation is needed for the employer if one’s disability is not obvious. While people do not need to divulge a specific diagnosis, they do need to give some type of reason for their disability if requesting an accommodation. Saying they have a “neurological condition” may be adequate – and this can be stated in their medical documentation from their doctor as well, rather than specifically saying that they have MS, should anyone prefer to keep his or her diagnosis private.
Individuals may feel the need to divulge that they have MS, or some type of disability, when their symptoms may be easily observed and can no longer be hidden – such as when experiencing changes in mobility. They may also want to tell their employer when having to take extra days off from work and are having trouble keeping up with their duties. Another reason may be to request modifications to their work environment, job description, or schedule. Examples of schedule changes may include such options as flexible hours, job-sharing, changing from full-time to part-time hours, and working from home.
In regard to interviewing for a new job, potential employers are not allowed to ask whether or not an applicant has a disability. However, they may ask applicants if they have any concerns with their ability to be proficient at the job. If a medical exam is required, it must be one that is required for all individuals applying for similar positions and must also be related to the work at that company.
Clinical Instructor/ Social Worker Kara Barton, MSW, LCSW, from the Keck Medical Center of the University of Southern California, has served as a speaker for MSAA’s educational programs, providing important details on employment and MS. Ms. Barton explains, “I have worked with people living with MS and other neurological diagnoses for more than a decade. I recognize that existing laws do not help to reduce the fear and worry that arise when a diagnosis could change one’s work and potential earnings.”
“However, I know that such changes may be seen as an opportunity for people to reassess their values and needs. This becomes a sort of personal reflection that redirects the focus from one of fear, to a path of hope, building a new way of living. When this focus has been redirected, one is not a victim, but rather an agent overseeing the changes in his or her own life. I encourage people to identify and take advantage of the many resources available for individuals who are changing directions or careers in their lives. Doing so will help to avoid isolation and lack of motivation. Building strong support can be key to sustaining professional longevity and a high quality of life.”
*Some of the employment information is from: The Everything Health Guide to Multiple Sclerosis (Adams Media, 2009), written by Margot Russell with Allen C. Bowling, MD, PhD.
Attorney and Counselor at Law Jamie R. Hall specializes in Social Security Disability and Long-Term Disability. He has handled hundreds of disability cases nationwide from his practice in Kennett Square, Pennsylvania. In this section on government disability programs, Mr. Hall answers some commonly asked questions about applying for disability benefits.
When someone with MS experiences worsening symptoms that interfere with his or her ability to work, what government programs are available?
The number of government programs available to assist individuals with MS is markedly limited. The three primary programs that support those who have left work due to MS are: Social Security Disability Insurance (SSDI); Supplemental Security Income (SSI); and state-based, short-term disability benefits.
How do these programs differ in terms of benefits?
Social Security Disability Insurance (SSDI) is the best of the three programs, as it pays a benefit for the disabled individual, his or her minor children, and does permit limited, part-time work. It also provides access to Medicare after a waiting period. Unfortunately, the process of applying for this benefit can take up to three years, depending on whether the claimant must appeal the matter at the hearing level. The program also has a five-month waiting period before any benefits are payable.
SSDI has a number of requirements, including the number of years worked – both in terms of lifetime work and recent work; the latter requires someone to have worked at least five of the past 10 years prior to disability. These types of issues can become complicated for people who haven’t worked for the past five-plus years, possibly while staying home to care for children, and then finding that they are unable to return to the workforce due to worsening symptoms. Additionally, age is another factor, where one’s ability to perform certain full-time jobs when younger than 50, or older than 50, is taken into consideration.
Supplemental Security Income (SSI) benefits are limited to individuals with minimal assets and low family income, and the program provides only a small payment. It permits almost no earnings and provides only access to Medicaid.
State-based benefits are only available in a minority of states – such as California and New Jersey – and typically cover only a short period of time. For those living in these states, it can provide a financial bridge to cover the period it takes for the Social Security Administration (SSA) to make a decision on an SSDI or SSI claim.
How does someone go about applying for these programs, and should people do anything to prepare in advance?
I generally recommend that people apply through an attorney from the start. If pursuing a claim on their own, however, they should file online at ssa.gov. The SSA’s online portal allows individuals to save their claim and complete the filing over several sittings if necessary. For claimants with fatigue and focus issues, applying online is a good method to file a well thought-out claim at their own pace. Although claims can also be filed through SSA representatives on the phone or in person, the quality of such claims varies with the skill level of the representative, time allotted, and the quality of information provided by the claimant.
In terms of preparation, reviewing one’s medical records in advance – to make sure nothing is incorrect or missing – is a good plan. Medical records are not limited to those from the neurologist; the SSA now considers reports from neuropsychologists, physical therapists, nurses, and other members of the healthcare team.
Individuals may also benefit from keeping a journal of symptoms, relapses, medications, and other relevant details; such records can be helpful in supporting how one’s condition has worsened over time. Phone apps, such as MSAA’s My MS Manager™ (at mymsaa.org/mobile), can assist with doctor reports and keeping information organized and current. As of 2016, the SSA put new “listings” into effect, specifically to help determine the impact of one’s MS symptoms.
If denied, should individuals request an appeal or reapply?
As to appeals, my thought has always been that if a claim is good enough to file, it’s good enough to appeal through the hearing level. Reapplying, which means giving up on the current claim and filing a new claim, presents three problems. First, there is little reason to believe a different decision will be reached on another application. Second, the best chance of approval in the whole process is through an appeal at the hearing level. And third, SSDI eligibility can expire, and failing to appeal may forfeit valuable rights.
When should a lawyer be consulted?
An attorney can be very helpful with the initial filing. The information that the lawyer can provide to the SSA for a disability claim may help to avoid an initial denial. Although an initial decision may take only four months, if denied, the next step is for an appeal, which requires a hearing – potentially adding another two years to the application process. If an application is denied, I strongly recommend having an attorney for the appeal and hearing. At this stage, the claimant has unsuccessfully pursued the claim on his or her own, and further attempts to represent oneself can result in irreparable harm to the claim. The hearing simply moves too quickly in the courtroom and is too complex to represent oneself.
What is the best way to find a lawyer?
MS claims are different than the vast majority of claims. Proving fatigue, cognitive slowing, bladder issues, and many of the other typical MS symptoms requires knowledge of the condition as well as the SSDI claims process.
One way to inquire about an attorney is through one’s neurologist, who may be familiar with lawyers who are experienced with filing disability claims for individuals with MS. Other ways to locate a lawyer may be through internet forums and internet searches for lawyers experienced in MS. Additionally, one’s lawyer does not need to be local to the claimant. Disability cases are frequently handled long-distance through phone, mail, and email communications. When handling cases across the country, with many of my clients, I only meet them in-person if a claim goes to a hearing.
What are the misconceptions that people have about these types of programs?
Some people believe that everyone is denied SSDI benefits at the initial level. We have found that well-supported claims filed by MS patients, particularly if aged 50 or older, have a reasonable success rate. That being said, applicants should always assume that they will have to go to a hearing to be approved.
Many people are concerned they cannot afford an attorney. With the contingent fee structure, an attorney is only paid if the claim is approved, and is paid a portion of the past-due benefit. These fees are set by statute and are uniform across the industry: the attorney receives 25 percent of the past-due amount, with a maximum payment of $6,000. Additionally, claimants are permitted to change attorneys if they see fit. If a claimant has private long-term disability insurance and been approved for disability benefits, the insurance company will almost always pay for the SSDI attorney’s fee. Furthermore, the claimant can choose any attorney as their representative, and is not limited to the entity provided by the insurer.
Individuals applying for disability benefits often are not aware that they can work part time, both while applying as well as after benefits have been approved. This part-time work should be discussed with your attorney, but can be used at the hearing level as proof of one’s work ethic, as well as to show the impact of only a few hours at work on a person’s fatigue and function.
Do you have any resources for more information?
People can find a great amount of information on the SSA’s website at ssa.gov, including a wide variety of publications as well as explanations and instructions for applying for disability benefits. MSWorld.org has a good deal of patient-driven information in their forums, including a forum specifically discussing the disability claim process. I also worked with Can Do MS last fall to provide an hour-long presentation (with Q&A) on the Social Security Disability claim process. This webinar has been archived on their website at cando-ms.org. MSAA also has an online video, A Closer Look at Disability Benefits, at mymsaa.org/videos/closerlook-disability. Additionally, social workers at larger neurology offices are a great and under-utilized resource.
We hope that readers find the information in this article to be helpful. MSAA’s Helpline callers often tell our Client Services Specialists of the challenges to being newly diagnosed. In addition to adjusting to the diagnosis and addressing symptoms, other challenges include: the issues with family members and friends who don’t understand the disease and some of its symptoms; the variety of disease-modifying therapies and questions to ask the doctor; avoiding depression and isolation; employment issues and potentially a need to change careers; and the process of applying for Social Security Disability Insurance. This article may be helpful to keep on hand for future reference, or to show a loved one to help him or her get a better understanding of what someone with MS is experiencing.
Stephen Krieger, MD, FAAN, is the Associate Professor of Neurology at the Corinne Goldsmith Dickinson Center for MS, Icahn School of Medicine at Mount Sinai. Dr. Krieger explains, “I realize that being diagnosed with MS is like being invited into a club no one ever wished to join. But once the shock or frustration begins to wear off, I encourage anyone diagnosed with MS to look around and realize that this is a field of medicine marked by incredible scientific progress, a community of patients and advocates defined by their optimism and resilience, and a specialty of neurology filled with people who have devoted their careers to steering people with MS toward the best possible outcomes, for years and decades to come.”
Indeed, the medical community is more optimistic than ever about the future of disease-modifying therapies for MS and their potential to one day not only stop the progression of MS, but even return function to people whose MS is more advanced. In addition, many individuals with MS are benefiting from wellness strategies, such as eating a healthy diet, making positive lifestyle changes, and finding encouragement and camaraderie through support groups and internet forums. MSAA offers My MSAA Community, a peer-to-peer online forum (hosted by HealthUnlocked.com) where participants can share information and their experiences with multiple sclerosis. Individuals are also benefiting from physical and stress-reducing activities such as aquatic exercise, yoga, tai chi, mindfulness, and guided imagery.
In conclusion, Michelle T. Fabian, MD, who is the Assistant Professor at Corinne Goldsmith Dickinson Center for Multiple Sclerosis, Mount Sinai Hospital, provides her perspective on a diagnosis of MS. “For most, the diagnosis of MS is unexpected and life-altering. Early on, an approach to wellness is critical. I encourage my patients to focus on good nutrition, exercise, sleep, and strategies that will support emotional stability. I also encourage them to learn about the disease through reputable organizations such as MSAA, to cultivate healthy relationships, and to recognize that one can still enjoy an active lifestyle. Although it may be hard to believe at the time of a new diagnosis, many of my patients say that post-diagnosis, they feel healthier than ever before.”
Articles appearing previously in The Motivator:
“Cognitive Issues with MS: Research, Strategies, and Support,” Winter/Spring 2015
“Disease Effects and Needs of Minority Populations with MS,” Winter/Spring 2017
“Making the Most of Our Relationships,” Winter/Spring 2016
“Managing the Physical Symptoms of MS,” Summer/Fall 2013
“The Emotional and Psychological Symptoms of MS,” Winter/Spring 2014
“The Hidden Symptoms of MS,” Winter/Spring 2013
“Wellness in MS,” Summer/Fall 2015