Multiple Sclerosis For Dummies
Overview
Everyone's MS is different—learn the best way to manage yours
Multiple sclerosis (MS) is a chronic, unpredictable autoimmune disease that affects millions of people worldwide. It poses unique challenges for people with MS and their care partners because the symptoms (many of which are invisible to others) are so variable from day to day and month to month. Multiple Sclerosis For Dummies helps you and your loved ones understand the importance of early treatment and become familiar with all of the latest treatment options and therapies. You aren't alone—this compassionate guide includes resources for connecting with the right MS care provider, building a care team, managing your emotions and stress, and getting the support you need. Plus, you'll get tips for making lifestyle choices that help you along your MS path.
- Discover information on the latest diagnostic information, treatments, and symptom management strategies
- Learn why it's so important to take care of your mental health and emotional wellbeing as you treat your MS
- Get pointers for talking to MS care providers and your loved ones, advocating for yourself, and making decisions alongside your care team
- Find trustworthy books, websites, and community resources to expand your knowledge and improve your health
Multiple Sclerosis For Dummies is a great starting point for anyone facing a new MS diagnosis or looking for updated information. Partners and family members will also learn how to care for themselves while caring for the person they love.
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About The Author
Rosalind Kalb, PhD, CHC, is a clinical psychologist and lead senior programs consultant at Can Do MS, a health and wellness organization for those affected by MS.
Barbara Giesser, MD, is a neurologist and director of the MS Comprehensive Care Clinic at the Pacific Neuroscience Institute.
Kathleen Costello, ANP-BC, MSCN, is chief operating officer at Can Do MS.
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multiple sclerosis for dummies
CHEAT SHEET
Whether you've recently been diagnosed with multiple sclerosis (MS) or you've been living with this chronic illness for years, you want to live your life as fully and comfortably as possible. The good news is that you can! The symptoms of MS are manageable with medications, and rehabilitation strategies and treatments can reduce disease activity and slow progression.
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Multiple Sclerosis
A diagnosis of multiple sclerosis (MS) means developing a strong relationship with your doctors, nurses, and other healthcare professionals. They can work with you to manage your symptoms, slow the disease course, and cope with day-to-day challenges. The following are the important members of your healthcare team:
Neurologist (or in some situations it may be a nurse practitioner or physician assistant): Diagnoses and treats MS and other neurologic diseases.
Multiple Sclerosis
If you’ve been diagnosed with primary-progressive multiple sclerosis (MS), or your MS has become secondary-progressive without any more relapses, it is likely that you’re impatiently waiting to hear what treatments are available for you. The entire MS community — including healthcare professionals, scientists, and people with MS — is waiting along with you.
Multiple Sclerosis
Corticosteroids aren’t the answer for every person or for every MS relapse. Here are some other options for managing relapses:
H.P. Acthar Gel: For anyone who can’t obtain corticosteroids (shortages have occurred in the past), can’t tolerate the side effects, or whose veins don’t allow easy access for intravenous infusions, a medication called H.
Multiple Sclerosis
Multiple sclerosis (MS) is a chronic disease that’s likely to progress over time. Even with optimal use of the available treatment strategies, there’s still no magic bullet. Most people can expect to experience at least some change in their physical or cognitive abilities (or both). So you may be called upon to learn how to do things differently than you did in the past.
New mothers with multiple sclerosis (MS) who wish to breastfeed are definitely encouraged to do so — it won’t increase your risk of an MS relapse, and it’s great for the baby. The only reason your doctor may discourage nursing is if he or she feels it’s important for you to restart your disease-modifying medication right away to reduce your risk of relapses.
Multiple Sclerosis
Whereas health insurance helps pay for both your general and your multiple sclerosis-related (MS) healthcare costs, disability insurance helps replace your income if you become too disabled to earn a living. You can purchase disability insurance on your own. Some employers offer disability insurance (through a commercial insurance company) to their employees as a benefit.
Despite popular belief, moms with multiple sclerosis (MS) deliver their babies just like other women do (you know, with lots of yelling, grunting, and gnashing of teeth). And just like women without MS, you have anesthesia options to make childbirth a little easier. If you want or need anesthesia, all types are considered safe for you to use — the choice is up to you and your physician.
Multiple Sclerosis
In 2009, Dr. Paolo Zamboni — a vascular surgeon in Ferrara, Italy — introduced a phenomenon called chronic cerebrospinal venous insufficiency (CCSVI) to the MS world. Following a study of 65 people with MS, Dr. Zamboni proposed that an abnormality in blood drainage from the brain and spinal cord may contribute to nervous system damage in MS.
Multiple Sclerosis
Clinically isolated syndrome (CIS) can indicate the possibility of multiple sclerosis (MS), but it can’t be used solo as a tool to diagnose it. CIS is a first clinical episode lasting at least 24 hours that is caused by inflammation and demyelination in the CNS. One episode alone doesn’t meet the MS criterion for dissemination in time.
Multiple Sclerosis
People who have been diagnosed with multiple sclerosis (MS) can have all sorts of reactions and feelings over the course of the disease. But you have to remember that all of these same feelings are shared by family members too. For example, here are just a few of the emotions that your family may experience:
Grief: This normal expression of loss is common.
Currently, you can find quite a few multiple sclerosis (MS) specialty centers around the country, each offering some variation on this ideal arrangement. The Consortium of MS Centers (CMSC), an organization for health professionals involved in MS care, lists its member centers.
In addition, you can find a constantly growing list of Centers for Comprehensive Care recognized by the National MS Society.
Multiple Sclerosis
Given all the treatment strategies you’re likely to need over the course of your multiple sclerosis (MS), you’re probably wondering how to figure out what to do and when you should do it. Of course, your neurologist will likely be guiding you — but a treatment template would be useful to help you:
Think about the types of treatment you need
Identify the professionals who are most qualified to provide your treatment
Facilitate conversations with your doctor and other healthcare providers
The following steps can help you use the template most effectively:
Identify the problem(s) you’re trying to solve.
Multiple Sclerosis
Well over a decade ago, a group of multiple sclerosis (MS) specialists — researchers and clinicians — got together to develop a common language for talking about MS. The group identified the following four disease courses, as illustrated in the figure:
Relapsing-remitting MS (RRMS): MS begins as a relapsing-remitting disease about 85 percent of the time.
Multiple Sclerosis
All eight disease-modifying medications that are approved by the U.S. Food and Drug Administration (FDA) to treat MS have been shown to be effective for people who experience relapses.So, as long as you continue to have relapses, you’re still a good candidate for most, if not all, of these medications. However, the evidence is pretty strong that these medications have their greatest impact early in the disease, primarily by reducing inflammation in the central nervous system (CNS) and reducing the number and severity of relapses.
Multiple Sclerosis
Managing multiple sclerosis (MS) is a little like managing an unruly toddler — sometimes figuring out who’s winning is difficult, but it’s up to you to do everything you can to maintain control. Even before the disease has caused any significant symptoms or problems, it’s having a field day in your central nervous system (CNS).
Multiple Sclerosis
Everyone’s initial reaction to getting a multiple sclerosis (MS) diagnosis is going to be different. Whatever you’re experiencing, whether it’s shock, denial, anxiety, anger, or even relief (or some combination of all of these), keep in mind that these reactions are normal, and that you — and those who care about you — are going to reexperience some variation of them whenever MS brings new symptoms and challenges into your life.
Multiple Sclerosis
Clear communication about your multiple sclerosis (MS) is the best way to avoid confusion, resentment, and “I told you so” conversations down the line. To enhance your communication, you need to get better acquainted with MS. You don’t have to become the world’s expert on it, but you do need to know enough to make wise choices and sound decisions.
Multiple Sclerosis
Even with symptoms that present physical challenges, people with multiple sclerosis (MS) can enjoy a wide variety of activities. You don’t have to be a great athlete to get physical. Here are some that you may want to try:
Water activities in a cool pool: These are ideal if your MS is heat-sensitive. Most people do well in water that’s no warmer than 80 to 84 degrees.
You probably thought that dealing with your own feelings about being diagnosed with multiple sclerosis (MS) was hard enough. Well, guess what? You have to deal with everyone else’s feelings as well.
This task wouldn’t be so difficult if all the people in your life reacted in the same way, or if you could predict what the various responses might be.
Multiple Sclerosis
Any good multiple sclerosis (MS) doctor will tell you that treating MS is as much an art as it is a science — in other words, it’s more creative problem-solving than hard-and-fast rules. Getting a handle on the available disease-modifying therapies is no easy task, but several resources are available to help you.
If you have recently been diagnosed with multiple sclerosis (MS), it is important to give yourself time and space to grieve. You may be asking “What’s grieving got to do with it? I’m still here. MS isn’t going to kill me.”
But grieving is an important — and healthy — part of living with MS. It’s what prepares and empowers you (and those who care about you) to identify satisfying and creative ways to deal with whatever changes MS brings to your life.
Multiple Sclerosis
When you have multiple sclerosis (MS), your energy may be in very short supply. Some days you feel like taking on the world and other days you feel like taking to your bed. You’re not alone. When you experience energy ups and downs, you can be proactive and manage your energy bank in the following ways to help you get through each day:
Set priorities to ensure the best use of your daily energy supply.
Multiple Sclerosis
Government laws are complicated and can be difficult to navigate, especially if your multiple sclerosis (MS) leaves you functioning at less than 100 percent. It’s often confusing to know what is covered by what and what is supposed to happen when.
The following scenarios provide a few examples to help you get your head around the logistics of the Consolidated Omnibus Reconciliation Act (COBRA) and the Health Insurance Portability and Accountability Act (HIPAA):
George was diagnosed with MS while working for the ABC Corp.
Multiple Sclerosis
No one test can absolutely detect multiple sclerosis (MS), but certain tests including magnetic resonance imaging (MRI) can be used to help confirm the diagnosis. The scan is a highly-sensitive, non-invasive way to view areas of damage in the central nervous system (CNS).
MRI uses a strong magnet, radio frequency pulses, and specialized computer software to create detailed pictures of your brain and spinal cord.
After you decide to talk to your kids about multiple sclerosis (MS), you may be wondering what to say and how to say it. Here are a few basic things to keep in mind:
Children have individual needs and learning styles. Because one size definitely doesn’t fit all, you have to tailor your conversations to each child’s needs — preferably one-on-one.
Children have a difficult time understanding symptoms they can’t see, such as those you might have with multiple sclerosis (MS). They can see that you trip or lose your balance and need a cane or scooter to help you walk. And they can see (and probably think that it’s funny) that you drop things a lot.
But kids have a much harder time getting a handle on fatigue, cognitive, or vision problems or other invisible symptom.
Multiple Sclerosis
When you have multiple sclerosis (MS), knowing how to get and keep your health insurance isn't enough. You also need to know how to file an appeal if your insurance plan refuses to pay for some or all of a treatment your doctor has prescribed for you — which can happen with a lot of the medications and services that are used to manage MS.
Multiple Sclerosis
The hard truth about multiple sclerosis (MS) is that it may be difficult to predict from morning to night (let alone from one week, month, or year to the next) how you’re likely to feel.
Once the initial shock wears off, people generally cope pretty well with the changes that MS brings — after a period of upset, they figure out how to adapt and change the way they do things.
Multiple Sclerosis
Most people with multiple sclerosis (MS) — except those with primary-progressive MS — experience relapses (also called attacks, exacerbations, or flares) during the early phases of the disease.
What is an MS relapse?
A relapse, which is defined as the appearance of new symptoms or the aggravation of old ones, lasts at least 24 hours (more often a few weeks) and is associated with inflammation and demyelination in the brain or spinal cord.
If you have multiple sclerosis (MS), you’re probably worrying about how MS can or will get in the way of doing stuff with your kids. You probably have some set ideas about what parents ought to be able to do with and for their children.
If you don’t have kids yet, you may be picturing the way your mom and dad did things with you.
Multiple Sclerosis
Even though multiple sclerosis (MS) is described as the most common neurologic disorder diagnosed in young adults, the problem doesn’t appear to originate with the nervous system. Instead, decades of research have pointed to the body’s immune system as the culprit.
Some kind of malfunction in the immune system interferes with the functioning of the body’s nervous system, resulting in the symptoms commonly associated with MS.
Multiple Sclerosis
A variety of immunosuppressants are currently used to treat multiple sclerosis (MS). Even though the FDA hasn’t approved their specific use in MS, the following immunosuppressants are used by some neurologists when the FDA-approved treatments have not been successful:
Cytoxan (cyclophosphamide): Cytoxan is a potent immunosuppressive drug that’s usually given to treat cancer.
Multiple Sclerosis
Even though it wasn’t all that long ago that people with MS were told not to exercise, things have changed. Here’s the basic message: Exercise is good for you. Physical activity geared to your abilities and limitations provides many benefits, including
Reducing your fatigue (difficult to believe but absolutely true)
Maintaining and increasing your endurance and the flexibility of your joints and muscles
Improving your cardiovascular health
Improving bowel and bladder functions
Strengthening your bones
Improving your mood
Helping with weight management
In spite of all the good reasons to get out there and move around, people with MS often find it challenging.
Multiple Sclerosis
Doctors and scientists all over the world have been researching the causes of multiple sclerosis (MS) for years. The more that is learned and understood about MS, the more effective treatments become. This means MS patients’ quality of life improves as well. Following are some of the recent questions science has been asking about MS, along with the possible answers.
Multiple Sclerosis
The good news is that many first-line treatment options are available to treat multiple sclerosis (MS) — and more are being developed. The challenge is that with more options, you have more considerations when making a choice. Following are some important facts information about each of the injectable medications:
Interferon beta medications
Interferons are naturally occurring proteins that are important to the body’s defense against viral infections.
Multiple Sclerosis
Avonex, Betaseron, Extavia, Rebif, and Copaxone are the five injectable medications available for the treatment of multiple sclerosis (MS). Each of them primarily targets inflammation in the central nervous system (CNS).
Avonex, Betaseron, Extavia, and Rebif — which are all interferon beta medications — are approved for any person who experiences relapses — whether he or she has relapsing-remitting MS (RRMS), secondary-progressive MS (SPMS), or progressive-relapsing MS (PRMS).
Just because you have multiple sclerosis (MS), it doesn’t mean you have to give up intimacy. When the word “intimacy” is used these days, everyone tends to assume it’s all about sex. But, there’s definitely more to it than that. Intimacy involves all of the things that keep your partnership healthy and satisfying, including:
Communication: The couples who communicate most successfully are those who can listen as well as talk, and who can recognize their points of agreement while acknowledging their differences.
Multiple Sclerosis
Unfortunately, some people with multiple sclerosis (MS) have a tendency to give up activities when they can no longer do them the way they used to. You may, for example, give up skiing because your balance and energy aren’t what they used to be. Then, you may find that long walks with your partner are a lot more difficult and tiring than they used to be.
Multiple Sclerosis
People with more advanced multiple sclerosis (MS) may begin to question their value to themselves and others. They may start to lose sight of who they are and what they have to offer as the disease takes its toll in so many different ways.
You’re made up of many parts — you have qualities, interests, abilities, and quirks that you’ve acquired over a lifetime.
Multiple Sclerosis
In terms of multiple sclerosis (MS), the phrase “quality of life” means different things to different people. For example, what’s important in your life may differ from what’s important in someone else’s life. The challenge, however, is the same for everyone who’s dealing with the more advanced symptoms of MS: To find ways to keep life full, active, and satisfying despite whatever symptoms you may have.
Multiple Sclerosis
Whether or not you have multiple sclerosis, most social interactions are built around shared activities and interests. So, when MS challenges these activities, your social relationships may be challenged, as well.
When you find yourself in a situation like this, you may be worried about slowing everyone else down, being a nuisance, or feeling uncomfortable (even though you shouldn’t!
With or without a multiple sclerosis (MS) diagnosis, the goal during pregnancy is always to be taking as few medications as possible in order to avoid problems for your growing baby. Before trying to become pregnant, be sure to discuss all the medications you’re taking (prescription and over-the-counter) with your physician so that changes or substitutions can be made prior to conception if needed.
Multiple Sclerosis
Even though the decision to use a mobility aid is distressing for many people with multiple sclerosis (MS), using one is an effective way of letting the people around you know that you’re doing everything that you can to get around safely and independently. It sends a clear message: “I have some difficulty with walking, balance, or fatigue, and I’m dealing with it.
Multiple Sclerosis
Your health is about more than just your multiple sclerosis (MS). So, as you develop your master plan for the future, remember to take into account your overall health and fitness as well as what’s going on with your MS. For example, ask yourself if you’re up-to-date with the health screening exams for people your age.
Multiple Sclerosis
When you have multiple sclerosis (MS), careful planning is one of the best gifts that you can give yourself and your family. If you gear up to deal with whatever challenges MS can bring, and then find down the road that your MS has actually remained pretty stable and manageable, you haven’t lost anything except some planning time.
Multiple Sclerosis
Having good health insurance coverage is important for the average person, but for someone who has multiple sclerosis (MS) or another long-term disease, it’s even more important because things can get costly. So, for the purposes of financial planning, the important thing is to figure out the costs associated with the coverage you have.
Multiple Sclerosis
Moms and dads with multiple sclerosis (MS) who can’t get around as quickly or easily as they used to worry about how they’ll be able to discipline their children. In other words, if they can’t outrun their kids, how can they maintain any kind of control?
Well, the fact is that most kids can outrun their parents eventually anyway — with or without MS.
Moms and dads with multiple sclerosis (MS) sometimes need to look to others — their partners, children, extended family members, and friends — for help with their daily activities or their care. But sometimes, children are given more caregiving responsibilities than they can handle. Even though this doesn’t happen often, it is important to emphasize that kids need to be able to be kids — not miniature adults.
Multiple Sclerosis
When your kids are acting up or you’ve noticed differences in their behavior or mood, are they running into problems due to your multiple sclerosis (MS) or is something else is going on? Even though MS is definitely not the root of all evil, you don’t want to miss the times when it is. Here are some typical scenarios and the best ways to handle them:
Your 5-year-old starts wetting his bed after two years with a “clean” record.
Family-planning decisions are never easy, especially when multiple sclerosis (MS) is present. All prospective moms and dads face some uncertainties in their future, but those with MS face even more because of the unpredictability of the disease. Everyone is faced with lots of uncertainties in life. However, the unpredictability of MS — from day to day and over the long haul — makes big life decisions (like whether to start a family) even more complicated.
Multiple Sclerosis
Under the ADA, the responsibility for requesting accommodations lies with you. So, you need to be the one to figure out exactly what you need, and you need to be the one to initiate the conversation. Don’t wait until your supervisor starts complaining about your performance. Keep an eye on your own performance, recognize when it’s slipping, and figure out what changes could be made that would help bring your performance back up to snuff.
Multiple Sclerosis
A good resource to know about in case you and your employer can’t come to an agreement about accommodations for your multiple sclerosis (MS) is the U.S. Equal Employment Opportunity Commission (EEOC), which oversees enforcement of the employment title of the ADA.
Before calling in the big guns, however, it’s a good idea to try to work things out with your employer if at all possible in order to avoid the legal hassles.
Multiple Sclerosis
Fatigue is the most common (and often the most disabling) symptom reported by people with multiple sclerosis (MS). While there are often a number of contributing factors, one of the most common causes of fatigue is medication. Many of medications prescribed for the treatment of MS have drowsiness as a side effect.
Multiple Sclerosis
As with many other situations in life, your attitude is essential when starting life with multiple sclerosis (MS). Feisty, determined, and stubborn are all good qualities to bring to the table. Making sure that you’re fighting the right battles is also important.
Because MS can’t be cured yet, winning the war against it isn’t possible.
Multiple Sclerosis
Getting diagnosed with MS has ripple effects — when one person in a family is diagnosed with MS, the entire family is affected by it. Even though the symptoms are yours, your loved ones share everything from the impact of those symptoms on daily life to the financial pressures caused by MS. And like you, each family member is going to react to all of these challenges.
Multiple Sclerosis
Multiple Sclerosis (MS) is generally a relapsing-remitting disease, which means that symptoms come and go in an unpredictable way. So, don't make big decisions about any major life activities in the middle of a relapse or a particularly stressful week. Too many people end up leaving the workforce when they're first diagnosed, only to discover a few weeks or months down the road that they're feeling fine — but now they're unemployed.
Multiple Sclerosis
Given the high cost of healthcare in the United States, insurance coverage is particularly valuable for anyone with multiple sclerosis (MS). It may, in fact, may become one’s most valuable asset, because the costs related to managing this disease can be extremely high.
To take best advantage of your health coverage, you need to make careful choices based on the cost and practical implications of the following factors:
Who’s covered under the policy — employee, spouse, dependents?
One of the reasons that multiple sclerosis (MS) can be so difficult to diagnose is that neurologists (physicians who specialize in the diagnosis and treatment of nervous system disorders) haven’t yet found any specific tests that can be used to identify it. For example, you can’t culture it like you do with strep throat, or detect it with a blood test like you can with diabetes.
Multiple Sclerosis
Whether you've recently been diagnosed with multiple sclerosis (MS) or you've been living with this chronic illness for years, you want to live your life as fully and comfortably as possible. The good news is that you can! The symptoms of MS are manageable with medications, and rehabilitation strategies and treatments can reduce disease activity and slow progression.
Multiple Sclerosis
Myths about multiple sclerosis (MS) abound, and chances are if you’ve heard them, you haven’t heard much that was good. In fact, you may have heard only about wheelchairs, nursing homes, or even death — not a pretty picture. You tend to hear more about the bad stuff because the good stuff isn’t as visible.
MS myth: MS is fatal
Maybe you’ve heard about someone who died from MS.
Multiple Sclerosis
Part of adapting to life with multiple sclerosis (MS) is adapting to the unpredictability of your symptoms and their potential impact on your everyday life. As you probably know, MS symptoms can make it more difficult for you to do all the things you want to do.
So, if you’re feeling stressed out about keeping up with stuff, and you’re worried about how to meet everyone else’s needs and expectations as well as your own, it’s time to set some priorities for yourself.
Multiple Sclerosis
Some — but not all — multiple sclerosis (MS) patients who take one of the interferon beta medications (Avonex, Betaseron, Extavia, or Rebif) develop a form of antibody known as a neutralizing antibody (NAb), so called because it interferes with the biological activities of the interferon. When they occur, NAbs typically develop 12 to 18 months after the start of treatment.
Multiple Sclerosis
Gilenya (fingolimod) — the first oral medication for the treatment of multiple sclerosis (MS) — has been shown in clinical trials to reduce the frequency of clinical relapses, to delay the accumulation of physical disability, and to reduce brain lesion activity as shown on MRI. In a study comparing Gilenya with the injectable Avonex, Gilenya was more effective than Avonex in reducing the frequency of relapses and reducing disease activity as measured by lesion activity on MRI.
Multiple Sclerosis
To help you maintain control of your multiple sclerosis (MS), your doctor may recommend a medication that have been shown to slow or modify the disease course (known as disease-modifying therapies or DMTs for short).
One of the keys to success with the DMTs is knowing what you can reasonably expect from them, and what you can’t.
Approximately 80 to 90 percent of people with multiple sclerosis (MS) experience a problem with bladder function at one point or another. Given how early toilet training happens in life, it isn’t too surprising that problems in this area are so threatening to self-confidence and self-esteem.
Basically, you’ll come across two types of bladder problems in multiple sclerosis: Keeping it in when you want to and getting it out when you want to.
When you have multiple sclerosis (MS), you may be bothered by problems with bowel or bladder control. Like bladder control, bowel control depends on a healthy nervous system in which nerve signals flow smoothly between your gastrointestinal tract, spinal cord, and brain.
Here’s how the bowel system is supposed to work:
The stomach partially digests the food you eat and then sends it to the small intestine, which in turn sends it, with slow, propulsive movements, to the large intestine.
Deconditioning, the loss of physical fitness, is common in anyone with multiple sclerosis (MS) whose mobility has been impaired. People who don't get enough exercise gradually get out of shape, which means that their muscles are weaker and less toned and their cardiovascular system doesn't function as efficiently as it did before.
Depression is common in multiple sclerosis (MS) — significantly more common, in fact, than in the general population or in people with other chronic diseases. More than 50 percent of people with MS will experience a major depressive episode at some point during the illness.
Depression is generally unrelated to the time since diagnosis or to the level of disability.
Multiple Sclerosis
Eye problems often associated with multiple sclerosis (MS) are those that affect eye movement. The problems cannot be addressed with standard eyeglasses because the underlying cause is related to damage in the central nervous system (CNS).
The visual symptoms that commonly occur can be abrupt and frightening, and they can significantly interfere with everyday activities.
Multiple Sclerosis
Healthcare related to multiple sclerosis (MS) can be a major financial drain even when you have good insurance. No matter how you get your health coverage, make sure that you know the basic facts about the eligibility rules for your health plan. Without that knowledge, your healthcare costs could be higher than they need to be.
If you have multiple sclerosis (MS), you may begin to develop problems with walking and mobility. When that happens, your best strategy is to think in terms of maximizing your mobility, even if your walking isn't as reliable as it used to be.
Mobility aids help you to conserve energy and time so that you can do something more easily and efficiently.
Moodiness is by far the most common emotional change seen in people with MS. Even though these mood shifts are much less intense than the mood swings seen in bipolar disorder (formerly called manic-depressive disorder), they can be very uncomfortable for people with MS and their family members.
People describe themselves (and their partners and children are happy to verify it) as unusually irritable, cranky, and quick-to-anger.
Multiple Sclerosis
Whether or not you have multiple sclerosis (MS), today’s culture is filled with many loud and clear attitudes about sex. Everyone is supposed to be young, healthy, thin, and sexually alluring. No flab, blemishes, wrinkles, baldness, or infirmities of any kind are allowed.
With these messages coming at you from all sides, you may wonder how it’s possible to be sexual now that you have MS.
If you’re a guy and you have multiple sclerosis (MS), you’re probably wondering what you can do to treat the different sexual changes that can happen because of the disease.
If you have difficulty getting or maintaining an erection, talk to your doctor because one of these medications may be helpful for you. Clinical experience indicates that they’re effective for about 50 percent of men with MS.
Multiple Sclerosis
If you’re a woman dealing with sexual changes due to your multiple sclerosis (MS), we’ll go ahead and get the bad news out of the way first: There’s no magic bullet. Although the manufacturers of Viagra (sildenafil) tried very hard to demonstrate its usefulness for women as well as for men, they stopped their clinical trials in women after concluding that women’s sexual responses are much more “complex” than men’s (surprise, surprise).
Multiple Sclerosis
Understanding how multiple sclerosis (MS) effects your body can help you learn to work around your symptoms and continue having a healthy sex life. When everything goes smoothly, sex can feel pretty easy and automatic — you don’t have to do much work because your body basically takes over.
For example, when your body or mind is stimulated in a sexual way, your body responds: if you’re male, you get an erection, and if you’re female, you get vaginal lubrication and engorgement.
Multiple Sclerosis
If and when you start to feel as though multiple sclerosis (MS) is affecting every part of your life, you need to go on a treasure hunt. The prize is your MS-free zone — that part of you that MS just can’t touch.
This part is different for every person: It may be your love of music, sense of humor, spirituality, passion for soap operas, or any one of the zillion other things that tend to make people happy.
Multiple Sclerosis
Urinary tract infection (UTI), an infection in one or more of the structures in the urinary system, is a common problem in multiple sclerosis (MS). It is so common, in fact, that this is one of the first things your doctor will check any time your symptoms act up.
Anyone with a bladder emptying problem is at risk for a UTI because urine that sits around builds up bacteria.
Multiple Sclerosis
The Americans with Disabilities Act (ADA), which was passed in 1990, prohibits discrimination on the basis of disability — in employment, public services, public accommodations, and telephone services. When it comes to employment, the ADA basically says that personnel decisions — hiring, promoting, and firing — must be made without regard to a person’s disability status.
Multiple Sclerosis
Several complex federal laws are designed to help protect people who have or who are seeking insurance, including those with multiple sclerosis (MS). Among them, the Health Insurance Portability and Accountability Act (HIPAA) is one you’ll want to pay attention to because it specifically provides protection to people with a history of health problems.
Multiple Sclerosis
The body has a natural capacity to heal some of the damage caused by multiple sclerosis (MS). For example, partial healing occurs following each MS relapse.
Here’s how it works: The inflammation that occurs during an MS relapse causes edema — the accumulation of fluids at the site of the damaged myelin (picture what happens when you sprain your ankle).
Multiple Sclerosis
Being alert to some of the ways that multiple sclerosis (MS) symptoms can interfere with healthy eating can help you stay on track. Even with the best of intentions, maintaining good eating habits can be difficult. For example, consider these troublesome symptoms:
Fatigue: If just getting through the day takes all your energy, putting time and effort into healthy meals can seem overwhelming.
Multiple Sclerosis
You and your family members are likely to be bombarded with sound-bites and advertising regarding various types of complementary and alternative medicine (CAM). In your eagerness to get a grip on your MS and feel better, you may be persuaded to try a little bit of this and a little bit of that, without carefully considering the pros and cons.
Multiple Sclerosis
Multiple sclerosis (MS) can challenge even the best of partnerships. There isn’t a young couple in the world — unless they grew up in families in which someone had a chronic illness or disability — that has a clue what “in sickness and in health” really means. The challenge is no doubt easier for those of you who already have a history together.
Multiple Sclerosis
Each disease-modifying therapy (DMT) used in the treatment of multiple sclerosis (MS) has its advantages and disadvantages and each comes with potential benefits and risks. The medications that have the potential to offer greater benefits are also the ones that pose more significant risks As a result, the decisions you make with your healthcare team will be increasingly complex as more treatment options become available.
Multiple Sclerosis
Now that you’ve been diagnosed with multiple sclerosis (MS), family life may feel a little different — and you and your family may find talking to each other about it difficult. So, just at the point when you need to communicate with one another about what’s going on and what you’re going to do about it, you may find talking about it difficult.
Multiple Sclerosis
CAM, short for complementary and alternative medicine, includes the substances or therapies that a person with multiple sclerosis (MS) chooses to use along with the treatments prescribed by his or her physician (complementary), as well as those that a person uses instead of prescribed treatments (alternative).
Multiple Sclerosis
Given that most relapses gradually get better on their own, you’re probably wondering how your doctor decides whether to treat a relapse or not. Here’s the bottom line answer: In general, neurologists will treat the relapse with corticosteroids if it’s interfering significantly with your daily life.
For example, if your vision or ability to walk are impaired — and you can’t drive your car, function at work, or take care of your kids — your doctor is likely to recommend treatment.
Multiple Sclerosis
If you have multiple sclerosis (MS), you’re bound to experience increased stress, so it’s helpful to create a plan to keep stress from bringing you to a screeching halt. The first step in your stress management plan is to remind yourself (repeatedly, if necessary) that stressing yourself out about stress is pointless.
Multiple Sclerosis
Because bowel complications are so common with multiple sclerosis (MS), the keys to comfortable bowel management are preventing the problems in the first place and developing a regular bowel regimen. But, remember, “regular” doesn’t necessarily mean “daily.” Instead, it just means at an interval that’s normal for you (probably every one to three days).
Multiple Sclerosis
Complementary and alternative medicine (CAM) is a mixed bag of goodies: Some treatments are beneficial, some won’t hurt you but won’t do much good either, and some are out-and-out dangerous. In the face of all the ads and testimonials (for example, “I threw away my cane!” and “I was totally cured!”), here are some key points to keep in mind:
If a cure for MS had already been found, the National MS Society and other MS organizations would have broadcast it far and wide.
Multiple Sclerosis
Research studies on cognitive function in multiple sclerosis (MS) have demonstrated that as many as 50 to 66 percent of people will experience some cognitive changes over the course of the disease. Taking a lot of tests to see how your brain is working may not be your idea of fun, but consider these reasons why you may decide to go for it anyway:
When the neurologist asks you to remember three words, count backwards by threes or sevens, or name the president (part of the brief mental status exam that neurologists sometimes do to evaluate cognition), you do just fine.
When you’re dealing with multiple sclerosis (MS), the legal and financial issues involved in your employment decisions are complex for even the savviest of folks. So, it’s well worth your while to get acquainted with the resources that are out there to help you with questions, concerns, and legal issues related to your employment.
Multiple Sclerosis
You can most definitely be well even though you have multiple sclerosis (MS). Wellness is all about feeling the best you possibly can — physically, emotionally, and spiritually. You can achieve wellness by paying attention to the whole you and by making sure that you have the following:
Adequate rest
Good stress management strategies
Whatever form of spiritual sustenance you want and need
A healthy diet
The right kind of exercise program
A feeling of balance (and we don’t mean the walking-on-a-tightrope kind) is also important.
Multiple Sclerosis
After a multiple sclerosis (MS) diagnosis has been confirmed, and you and your neurologist have decided on a course of treatment, the next step is to establish a pattern for your routine care. Most MS specialists like to see their patients about twice a year — more often if the MS has been active, and less often if things are pretty quiet or the patient is being monitored by a local neurologist closer to home.
Multiple Sclerosis
Whether you have multiple sclerosis or not, the goal of exercise is to feel and function better. But for those who do have MS, the familiar “no pain, no gain” philosophy doesn’t apply — there’s no need to push yourself to the limit. Here are some tips to help you be comfortable and safe while getting the greatest possible benefit out of your physical activities:
Try to plan your exercise during peak energy times.
Multiple Sclerosis
Over the years, many, many people with multiple sclerosis (MS) have asked, “Am I going to end up in a nursing home?” Like everyone else, you probably find the idea of long-term care to be really scary.
The short answer is that the vast majority of people don’t end up in nursing homes. However, a person with MS may need assistance — sometimes more than her or his family members can handle alone.
Multiple Sclerosis
Because your relationship with your multiple sclerosis (MS) doctor will be a long and personal one (you may be discussing oh-so-comfortable subjects like leaky bladders and flagging sex lives), finding someone you feel comfortable with is important. Comfort means different things to different people, but following are some key elements are trust, good communication, and mutual respect.
Even those people who are seeing a multiple sclerosis (MS) specialist sometimes feel the need to get a second opinion. And MS specialists would be the first to acknowledge how much of MS care is a combination of art and science.
Given how many unanswered questions there are about MS, and the fact that none of the available treatments is completely effective in controlling the disease, doctors have differing opinions on how to handle just about every aspect of care.
Multiple Sclerosis
Even if you don’t have multiple sclerosis (MS), modifying your behavior in ways that will enhance your health and wellness is never easy. Anyone who has made a New Year’s resolution knows how challenging it can be to change behavior, even when it is in your own best interests.
So whether you’re trying to be more vigilant about your medical or dental checkups, improve your diet, or increase your level of physical activity, the best strategy is to come up with a plan that you can live with.
Multiple Sclerosis
If you or someone you love has recently been diagnosed with multiple sclerosis (MS), you may be wondering “So what do I do now?” Because emotions can kick in quickly, whatever words the doctor said after giving you the diagnosis may be lost in a blur. Obviously, you’ll have opportunities to talk about it further in follow-up visits, but it may reassure you to know that many helpful resources are available to help you navigate the next few days, weeks, and months.
Multiple Sclerosis
Complementary and alternative medicine (CAM) treatments for multiple sclerosis (MS) come in many varieties, including those that are swallowed, injected, infused, or inhaled. For example, take a look at the following:
Bee venom therapy: Bee venom contains proteins that affect the immune system. However, the exact mechanism isn’t known.
Multiple Sclerosis
When you have multiple sclerosis (MS), hanging onto your health insurance can be difficult due to increased expenses, loss of income or employment benefits, and other problems. Fortunately, Congress and many states have already passed laws to protect your eligibility when you have MS.
In fact, these laws protect all Americans through life's most common life — such as getting too old to be covered by your parents' insurance policy, getting divorced, getting laid off from your job, or retiring.
Multiple Sclerosis
Sometimes attitudes — your own or other people’s — can get in the way of your job even more than your multiple sclerosis (MS) symptoms do. For example, many people mistakenly assume that anyone with a chronic illness or disability can’t be a productive employee or a valuable member of the team. Fortunately, attitudes can be changed with a little patience, some good information, and effective communication.
Multiple Sclerosis
Pseudobulbar affect (PBA), which is a complicated name for uncontrollable episodes of laughing or crying, can occur in MS and other neurological conditions. PBA is thought to result from damage in the prefrontal cortex of the brain that interferes with the corticobulbar tracts (which control emotions), and it occurs in about 10 percent of people with MS.
Multiple Sclerosis
The goal of treating multiple sclerosis (MS) is to help you feel and function well. So, together, you and your healthcare team can identify and implement strategies to manage your symptoms and keep you active, comfortable, and safe.
Manage your MS symptoms
Comprehensive symptom management is the key to keeping you on the go.
Multiple Sclerosis
When you have multiple sclerosis (MS) and you’re feeling overwhelmed, handling family stress starts with identifying the specific challenges and deciding whether they’re controllable or not (is Aunt Frieda really controllable?).
So, suppose that holiday gatherings at your house are a tradition that you and the extended family really enjoy.
Multiple Sclerosis
Unfortunately, multiple sclerosis (MS) can disrupt your family’s rhythm just the way that having weekend visitors temporarily changes the way you do things. But, because this visitor isn’t going home, your challenge is to figure out how to fit MS into your lives with the least amount of disruption possible.
All families have a rhythm of their own.
Multiple Sclerosis
One of the big complaints about multiple sclerosis (MS) is that it takes a lot of time and effort. For the person with MS, the drain on time and effort is more obvious — it may take longer, with a greater amount of effort than before, to get the same things done.
Simply getting around can sometimes be exhausting.
Multiple Sclerosis
When you’ve been diagnosed with a chronic illness like multiple sclerosis (MS), getting comfortable with the decision-making process and with the decisions you end up making is important to living comfortably. Improvements in treatment options have given patients more opportunity to continue living full, productive lives.
Multiple Sclerosis
If you have multiple sclerosis (MS), by now, one of your friends or family members has probably mentioned to you that he or she knew someone “who died of MS.” Try not to panic. Even though death can occasionally result from a virulent, rapidly progressive form of MS or from very severe complications, most people who have MS die from cancer, heart disease, and stroke like everyone else.
Sexual changes are actually pretty common in multiple sclerosis (MS). Approximately 85 percent of men report at least occasional problems, with the most common being getting or maintaining an erection. And approximately 50 to 75 percent of women report problems, the most common of which are loss of interest and changes in vaginal lubrication and sensation.
Multiple Sclerosis
Unfortunately, there are no quick fixes for some of the vision problems that can occur with multiple sclerosis (MS). So, if your vision remains impaired in spite of all of the interventions, contact a low-vision specialist. Unlike the neurologist or neuro-ophthalmologist who focuses primarily on diagnosing your symptoms and trying to manage them medically, low-vision specialists zero in on how your vision problems affect your everyday life.
Multiple Sclerosis
Unfortunately, you can’t eat your way around multiple sclerosis (MS). Even though a variety of special diets have been promoted as MS cures, none have been shown in controlled trials to alter the course or severity of MS. Like everyone else, you’ll benefit most from a healthy diet that provides the recommended nutrients for a person your age and that promotes good cardiovascular health.
When symptoms of multiple sclerosis (MS) such as weakness, balance problems, or stiffness make carrying out daily activities more difficult, you may find yourself having to work harder to do the same things that you did before — which will probably leave you feeling a lot more tired.
If, for example, getting dressed, making breakfast, climbing in and out of your car, and walking from your car to your office takes more effort, you may have used up all your energy before the day even starts.
Multiple Sclerosis
After you’ve decided to disclose your multiple sclerosis (MS) at work, it’s important to plan your strategy carefully. Follow these steps for a smooth disclosure:
Figure out who’s the best person at work to talk to.
You may need to talk to your boss, someone in the human resources department, or maybe your project manager.
Multiple Sclerosis
For people with multiple sclerosis (MS) there’s no substitute for working with a specialist to identify and design effective strategies to compensate for cognitive challenges. Here are some common-sense suggestions for managing any difficulties you may be having. Your first step is to get comfortable with the idea that it’s okay to do things differently — creative flexibility is your key to success.
Multiple Sclerosis
Even though multiple sclerosis (MS) is definitely enough for any one person to have to handle, it doesn’t protect you from other health problems. Although some people with MS report that they get fewer colds than they used to (maybe that overactive immune system is good for something after all!), you can expect to deal with all the usual things — colds, flu, and stomach bugs — along the way.
Multiple Sclerosis
In addition to the support you get from family and friends when you’re diagnosed with multiple sclerosis (MS), you can look to other sources of support as well. Other people living with MS can be helpful because they “get it.” They have had similar feelings, faced similar challenges, and made similar kinds of decisions.
Multiple Sclerosis
Researchers are busy studying every aspect of multiple sclerosis (MS) — searching for ways to treat the symptoms and slow the disease course more effectively, cure the disease so that function is restored in those who have lost it, and, ultimately, find a way to prevent it so that no one ever has to deal with the challenges of MS again.
Multiple Sclerosis
Because everyone’s situation and coping skills are different, you can safely assume that no one’s stresses — or the strategies they use for dealing with them — are exactly like anyone else’s. So, your best bet is to identify the things in your life that stress you out. Then you can figure out the strategies that are most helpful to you in dealing with them.
The National MS Society offers a lot of good resources to help you explain multiple sclerosis (MS) to your children. Here are a few of them:
Timmy’s Journey to Understanding MS is a fun cartoon about Timmy and his dad that helps explain MS to younger children. Call (800) FIGHT-MS (800-344-4867) to request a copy (DVD or video).
Multiple Sclerosis
If you have multiple sclerosis (MS) and, in spite of all necessary accommodations and short-term leave options, you’re still unable to perform your essential job functions, it’s time to look at the alternatives. Perhaps other positions in your company would be more suitable. Or maybe you could be retrained for work in some other field.
Multiple Sclerosis
Multiple sclerosis (MS) can cause many different kinds of sensory changes, most of which are annoying and uncomfortable but not serious. In other words, you may hate them but they don’t indicate big-time disease progression, and they generally aren’t incapacitating.
For example, numbness and pins and needles in the arms or legs are both very common.
Multiple Sclerosis
Normal speech and voice quality depend on complex messaging in the central nervous system. When multiple sclerosis (MS) is part of the equation, nerve impulses can’t always travel where they need to go, and speech and voice quality become impaired. Approximately 25 to 40 percent of people with MS experience these kinds of problems at one time or another.
Multiple Sclerosis
People with multiple sclerosis (MS) travel all over the world — on business and on vacation. They sightsee, trek, snorkel, and go white-water rafting, and you can too. The following suggestions can help you go where you want to go and do what you want to do when you get there. The world is your oyster.
MS and travel: Check in for a check up
Have a frank talk with your neurologist about any concerns you have regarding your trip.
Multiple Sclerosis
Parenting is never easy — it wasn’t a piece of cake before multiple sclerosis (MS) came along and it won’t be now. If you have MS and you’re raising kids, keep in mind some of the following strategies.
Call a spade a spade: Let MS take the blame when it needs to
Sometimes MS is going to get in the way of things that you or your kids want to do.
Multiple Sclerosis
If you have multiple sclerosis (MS), those symptoms may be getting in the way of your sex life. If this is the case, do what you need to do to take care of them. Consider the following problems (and solutions):
Fatigue can put sex on the bottom of your priority list. However, managing your fatigue effectively will give you more energy to get it on.
Multiple Sclerosis
In spite of the unpredictability of multiple sclerosis (MS), you can do a lot to feel prepared. Because MS is so variable from one person to the next, and people's life circumstances are so different, no one-size-fits-all solutions exist. But, the process involved in developing a safety net is basically the same for everyone.
Multiple Sclerosis
Whether you have multiple sclerosis (MS) or not, communication is a complex process, so don’t expect to be a pro right off the bat — most people aren’t. To get started, here are some tips for communicating with your adult family members.
Acknowledge your different communication styles. The starting point for good communication is recognizing that each of you may approach it differently.
Multiple Sclerosis
Although it is a common condition with multiple sclerosis (MS), weakness is a tricky thing to manage. Like fatigue, you have to figure out what's causing it in order to manage it effectively. Weakness can be caused by the following:
Deconditioning: This type of weakness, which results from lack of use or couch potato-itis, can be improved with progressive resistive exercise with weights.
Although many people experience fatigue on a regular basis, one type of fatigue, commonly referred to as lassitude, is unique to people with multiple sclerosis (MS). Lassitude is thought to result from poor nerve conduction caused by damage to the myelin around the nerve fibers in the central nervous system (CNS).
Multiple Sclerosis
In regard to multiple sclerosis (MS), the term long-term care refers to a wide range of services designed to help you or a family member carry out daily life activities. These services run the gamut from housekeeping help, personal assistance in your home, adult day health programs, and respite care, to community assisted-living options and nursing home care.
Multiple Sclerosis
Optic neuritis, or inflammation of the optic nerve, is the most common visual disorder associated with multiple sclerosis (MS), and it's often a person's first symptom of MS. With optic neuritis, you can have any or all of the following problems:
Vision loss in one eye (Even though loss in both eyes simultaneously is rare, it isn't uncommon for visual changes in the other eye to occur during subsequent episodes of optic neuritis.
Multiple Sclerosis
Because of multiple sclerosis (MS), many couples suddenly find that doing joint activities isn't possible anymore. Imagine what happens when MS occurs in a couple who has always played tennis or golf together, or hiked or skied together. As you can probably guess, this change can be particularly challenging for those couples whose social lives have been built around these activities.
Multiple Sclerosis
For multiple sclerosis (MS) patients, the cognitive evaluation is a series of tests (generally referred to as a test battery, which includes paper-and-pencil items and puzzles of various types) that’s designed to evaluate the full range of cognitive functions. Evaluations are performed by neuropsychologists as well as some occupational therapists (OTs) and speech/language pathologists (S/LPs).
Multiple Sclerosis
If no multiple sclerosis (MS) specialist is available in your insurance plan or in your geographic area, you may be relying on your family doctor or a general neurologist for your routine care. However, sometimes you do need to contact a specialist.
Here are some of the times when you may want to connect with a specialist:
When you need to know your options: Several treatment options are now available for MS, so if the doctor you’re currently seeing is only comfortable prescribing one or two of these medications, consulting with someone — at least initially — about what all your options are may be worth your while.
Multiple Sclerosis
When you’re facing a multiple sclerosis (MS) diagnosis, several key players can help you identify your options and support your decision-making efforts along the way. First and foremost on this list are MS professionals. Referrals to professionals who are knowledgeable about MS are available from the National MS Society (800-FIGHT-MS) or from the Consortium of MS Centers.
In addition to your neurologist and primary care physician, a number of health professionals may become involved in helping you manage life with multiple sclerosis (MS). If you’re fortunate to have access to a comprehensive MS center, you may find many of these specialists all in one place. Otherwise, you’ll need to round them up on your own or gather them with the help from your neurologist or family physician.
Following a major life change like being diagnosed with multiple sclerosis (MS), figuring out what to do next can be tricky. Some people worry so much about making the right choices that they find it difficult to make any at all. Here are some suggestions for getting started.
MS next steps: Catch your breath
People diagnosed with MS may do a surprising number of things during their first moments of shock — quit jobs, leave relationships, tell the world about the diagnosis, decide never to have children, and so on.
Multiple Sclerosis
The FDA approved Novantrone to treat people with relapsing-remitting multiple sclerosis (MS) that’s rapidly getting worse, as well as people with progressive-relapsing or secondary-progressive MS. Novatrone (mitoxantrone) is an immunosuppressant medication, which means that it completely shuts down the body’s immune system for a period of time.
Parenting is difficult enough without throwing multiple sclerosis (MS) into the mix. The following suggestions should address some of your most immediate concerns and give you some tips to handle it all:
Talk openly with your child about his or her diagnosis. It’s far better to give your child accurate information about what’s going on than to let his or her imagination fill in the blanks.
Multiple Sclerosis
As a parent or prospective parent with multiple sclerosis (MS), you’re probably worried about what effect your illness or disability will have on your children. You may wonder if you’ll be able to give them what they need or whether they will have to take care of you. Here are some things learned from research and clinical experience and from others who have studied this issue:
Kids who have a parent with MS generally do well emotionally, socially, and academically.
Multiple Sclerosis
Your neurologist is the key member of your healthcare team. As a specialist in diseases of the nervous system, he or she provides treatment options to manage your MS and the symptoms it can cause. The neurologist can also help you engage other healthcare professionals on your team — the nurse, rehabilitation professionals, and mental health experts who can work with you to optimize your health, daily functioning, and quality of life.
Multiple Sclerosis
When you have multiple sclerosis (MS), you can’t predict the future, but you can try to anticipate some of the changes or challenges that may crop up down the road. And anticipating these changes can help you stay in control of your life.
With or without MS, life is full of changes — some more expected than others.
Multiple Sclerosis
Daily life is filled with small stresses that can quickly add up to be bigger ones. In other words, it isn’t any one thing — such as struggling with the buttons on your blouse, getting stuck in traffic, or misplacing the notes for your first meeting — that wears you down. Instead, it’s the fact that they all happened before your morning coffee and you’re behind schedule before the day has even started.
Multiple Sclerosis
Although few complementary and alternative medicine (CAM) treatments have been studied in large controlled trials, enough small studies have been done with some of the treatments to indicate which ones may prove useful and which may not.
The following interventions are provided by a clinician or practitioner with specialized training or expertise:
Acupuncture: Acupuncture, a component of traditional Chinese medicine, involves inserting thin needles into specified acupuncture points on the body to alter the body’s energy flow.
The good news for couples is that women and men with multiple sclerosis (MS) can be effective, involved parents of healthy, happy children. Although the message prior to about 1950 was that women with MS shouldn’t even consider having kids, the research since then has confirmed repeatedly that MS and motherhood can go together just fine.
Multiple Sclerosis
Depression differs from normal grieving you may experience with multiple sclerosis (MS). But differentiating between the two on a day-to-day basis can be difficult because some of the feelings are similar and because depression can manifest itself in ways other than sadness or melancholy (for example, it can be shown through irritability and sullenness).
Multiple Sclerosis
In 2006, the National Multiple Sclerosis (MS) Society awarded $13.5 million for six regional Centers of Excellence to treat and study childhood MS. This network of centers offer optimal medical and psychosocial support to children under 18 and their families (with funds available to families in need of transportation, lodging, and medical care).
Multiple Sclerosis
The National Clinical Advisory Board of the National Multiple Sclerosis (MS) Society developed a consensus statement concerning the role of rehabilitation in MS care. The document provides guidance to physicians, nurses, therapists, insurers, policy makers, as well as people with MS, concerning the optimal use of physical rehabilitation strategies in MS care.
Multiple Sclerosis
When seeking relief for primary or secondary pain symptoms of multiple sclerosis (MS), the key is to find the right medication, taken at the right level, that provides the most relief without causing too much sleepiness or any other unpleasant side effects. Your neurologist may recommend lower doses of more than one medication at a time in order to maximize effectiveness while minimizing side effects.
Multiple Sclerosis
When you have multiple sclerosis (MS), sometimes helping someone else is the best way to take your mind off of what ails you. Many people remark on how much better they feel when they know they’re doing something that makes a difference to other people, whether at home or at their jobs, in a support group of some kind, or doing volunteer work.
Multiple Sclerosis
If you have progressive multiple sclerosis (MS), chances are high that the first question on your mind is about treatment options. The majority of people are initially diagnosed with a relapsing-remitting course that’s characterized by periodic attacks (relapses) followed by periods of remission. Other people experience a more steadily progressive course from the very beginning.
When you’re trying to decide who (if anyone) in your office should know about your multiple sclerosis (MS), it’s important to remember that disclosure in the workplace should generally be on a need-to-know basis. So ask yourself the following questions:
Who needs to know?
Why do they need to know?
How much do they need to know?
Even though multiple sclerosis (MS) may affect your employment situation at some point along the way — depending on the types of symptoms you have and the kind of work you do —quitting work doesn’t have to be part of your treatment plan. Apart from the obvious — that working brings in a paycheck — you can find lots of other reasons why staying in the workforce may be in your best interest.
Multiple Sclerosis
After you’re diagnosed with multiple sclerosis (MS), your primary care physician or neurologist may or may not be willing to be your overall healthcare team manager. If not, it’s up to you to assemble the team that best suits your needs. Putting your team together can be a challenge for even the savviest of consumers, so here are some strategies to keeping in mind:
Get referrals (from your physician or the National MS Society) to professionals with experience and expertise in MS.
Multiple Sclerosis
Because stress management in multiple sclerosis (MS) isn’t a one-size-fits-all proposition, the menu of techniques is extensive. Some of the basic types are out lined here, but you can check out Stress Management For Dummies by Allen Elkin (John Wiley & Sons, Inc.) for all the details on how to apply these strategies and others to the wide variety of stresses (MS-related and not) in your life.
Multiple Sclerosis
All of the multiple sclerosis (MS) treatment strategies in the world won’t do you a bit of good if you neglect your overall health. A word to the wise: MS can take up so much of your attention and your doctor’s that other important aspects of your health are neglected.
The tendency will be for you and others to attribute everything to your MS even though other things can happen as well.
Multiple Sclerosis
Even though you may feel like it some days, your multiple sclerosis (MS) isn’t written all over your face. Particularly if you’re dealing with any of the disease’s less visible symptoms, such as fatigue, weakness, bladder problems, or cognitive changes, other people may not have a clue what’s going on with you or what you may need — or not need — from them.
Multiple Sclerosis
Multiple sclerosis (MS) is typically diagnosed in the 20s, 30s, and 40s, when many people are looking for their significant others. Dating isn’t all that easy under the best of circumstances, so getting diagnosed with a chronic illness obviously adds another challenge. No one likes rejection, and everyone tries to find ways to avoid it.
Multiple Sclerosis
You’re a key player in your multiple sclerosis (MS) care. Neither the neurologic exam nor an MRI can tell the doctor everything that’s going on in your body. This means that even the most experienced of MS specialist physicians can’t do the job alone — your input is essential. Because the information you provide during your office visits enables your doctor to formulate treatment recommendations, this is no time to put on a show!
Multiple Sclerosis
Just when you’re hoping that the important people in your life get what you’re saying about your multiple sclerosis (MS), you’re likely to hear this very common response from family members, friends, and colleagues: “But you look so good!”
Figuring out how to respond to this double-edged sword can pose quite a challenge.
Multiple Sclerosis
People ask the question “How are you?” many times a day, often without even thinking about it. However, now when you hear it, it may not feel like such a simple question any more. When someone asks you how you are, it will be up to you to decide how much they really want to know and how much you want to say. Read on for some clues.
Multiple Sclerosis
Whether you want it or not, you’re likely to get a lot of advice from people about multiple sclerosis (MS) and how to take care of yourself and manage your life. Many patients report that they’re always being sent little newspaper clippings and website URLs filled with information about the latest “MS cure” or health fad.
Multiple Sclerosis
Sometimes people clam up when faced with an uncomfortable situation. For example, say you tell a good friend or colleague that you’ve been diagnosed with MS and you hear nothing from him or her but silence.
Or, maybe you’re having a really bad day and no one seems to be offering any help with that heavy door or that stack of papers you dropped.
No further tests are technically required to make a multiple sclerosis (MS) diagnosis when a patient’s medical history and neurologic exam provide evidence of two episodes of demyelination that are separated in time and space.
However, because no one diagnostic test is conclusive, various screenings and exams, along with magnetic resonance imaging (MRI) scanning, are typically used to confirm the initial diagnosis or to help the neurologist identify a second episode of demyelination (if it wasn’t apparent from the history or exam).
Multiple Sclerosis
Following review and approval by the National Multiple Sclerosis Society’s National Clinical Advisory Board, the “Goldman Consensus Statement on Depression in MS” was published in 2005 in the journal Multiple Sclerosis (volume 11, pp. 328–337). This document grew out of a concern among MS specialists about the lack of recognition and inadequate treatment of this serious condition.
Multiple Sclerosis
For many people, the idea that MS can affect the way they think is the most frightening aspect of this disease. “I can handle the physical symptoms, just don’t mess with my mind” is a pretty common refrain.
Surprisingly enough, cognitive changes weren’t even acknowledged or addressed by the medical community until about 25 years ago (which is somewhat perplexing given that Jean-Martin Charcot noted these symptoms in his early descriptions of MS in the late 1800s).
Multiple Sclerosis
Although multiple sclerosis (MS) can cause you to have even more stress than the average worker stress is an inevitable product of nearly any job. Just remember that even if your job is incredibly stressful, it probably still provides you with income, interesting challenges, enjoyable relationships with co-workers, and, if you’re lucky, health insurance.
Particularly as a person’s multiple sclerosis (MS) progresses, the medical team’s focus will increasingly be on his or her medical, psychological, and social needs. So you may find yourself feeling “out in the cold” — and with good reason. Those people who provide care for someone with a chronic illness have been referred to in the medical literature as “the invisible patients” because their physical and emotional needs tend to go unnoticed.
Multiple Sclerosis
So, you’re incredibly stressed out about your multiple sclerosis (MS). You worry all the time about getting worse, losing your job, and ending up in a wheelchair. Clearly, your first choice for getting rid of this stress in your life would be to dump the disease — but that’s not exactly possible. The next best choice is to focus on the things you can do something about rather than the things you can’t.
To diagnose multiple sclerosis (MS), neurologists rely on a person’s medical history, the neurologic exam, and a variety of laboratory tests to help confirm the diagnosis and rule out other medical conditions, such as:
Infections such as Lyme disease, syphilis, and HIV/AIDS
Inflammatory diseases such as systemic lupus erythematosus or other causes of vasculitis
Metabolic problems such as vitamin B12 deficiency or certain genetic disorders
Diseases of the spine
Certain types of tumors
All these conditions and more are running through your doctor’s mind as he or she tries to find an explanation for your symptoms.
Multiple Sclerosis
When you have multiple sclerosis (MS), the most important thing to remember is that you can have fun just like everyone else. If you like to travel, why stop now? As long as you’re willing to plan ahead, take good care of yourself on the journey, and be flexible and creative once you’re there, the sky’s the limit!
Multiple Sclerosis
Some forms of complementary and alternative treatments for multiple sclerosis (MS) involve activities that you can do on you own or in groups. For example, consider these activities:
Aromatherapy: Aromatherapy, in which the essential oils from certain kinds of plants are inhaled or applied by massage, has a low risk and a reasonable cost.
Multiple Sclerosis
A majority of people with multiple sclerosis (MS) will experience some cognitive changes over the course of the disease. Even though the severity of these changes can vary from mild to quite severe, the majority of these changes are in the mild-to-moderate range.
After you've had a comprehensive cognitive evaluation, you'll work with your doctor as well as the clinician who evaluated you to decide on a treatment plan that works for you.
Because multiple sclerosis (MS) is so complex, treatment involves several different strategies. Here are snapshots of several steps you can take to feel and function up to snuff:
Use disease-modifying therapy. Your doctor will discuss with you whether you’re a candidate for treatment with one of the disease-modifying therapies.
Multiple Sclerosis
A small percentage of people taking then drug Tysabri as a treatment medication for multiple sclerosis (MS) may develop progressive multifocal leukoencephalopathy – commonly referred to as PML. PML is a rare but rapidly progressive and often fatal viral infection of the brain.
PML is thought to be caused by the John Cunningham (JC) virus, which many people (a little more than half of people) are exposed to in childhood and carry in a dormant state without ever becoming ill.
Multiple Sclerosis
Tysabri (natalizumab) is a laboratory-produced monoclonal antibody used for treating multiple sclerosis (MS). It works by preventing potentially damaging immune cells in the bloodstream from crossing the blood-brain barrier into the brain and spinal cord. The FDA approved it in 2006 to treat relapsing forms of MS.
Of the 400,000 people in the United States with multiple sclerosis (MS), approximately 8,000 to 10,000 of them are children or adolescents. Initial symptoms have been seen as early as 13 months old, with a diagnosis as young as 2 years old. The majority, however, are diagnosed in their teens.
An additional 10,000 to 15,000 youngsters have experienced at least one symptom suggestive of MS.
Multiple Sclerosis
It wasn’t very long ago that treatment options for people with multiple sclerosis (MS) were nonexistent. Patients diagnosed with MS were told to just go home and learn to live with it. Dr. Labe Scheinberg — acknowledged by many to be the father of comprehensive MS care — referred to that unfortunate time as the “diagnose and adios” era of MS treatment.
Multiple Sclerosis
Some days you may feel pretty lousy when you have multiple sclerosis (MS). Other days you may feel okay or just so-so. If you’re oh-so-tired of feeling way below par, not to worry. You can improve the way you feel. These helpful tips can start you on your way to feeling healthy and well in spite of MS.
Talk with your neurologist — as early in the disease process as you can — about treatment with one of the approved disease-modifying therapies to slow disease activity and progression and reduce further nerve damage as much as possible.
Multiple Sclerosis
Two-thirds of people diagnosed with multiple sclerosis (MS) eventually need some kind of mobility device — such as a cane, walker, or scooter — to help them be as active as they want to be. In other words, walking may be impaired, but mobility doesn't have to be.
When you have MS, many different factors can affect your ability to walk easily and safely, so the first step is to identify the sources of the problem.
Multiple Sclerosis
Most scientists agree that no single virus or bacterium causes multiple sclerosis (MS) all by itself. They have also concluded that no single thing in the environment or in a person’s diet is directly responsible for the disease.
Currently, scientists believe that the disease is caused by a combination of several factors — including gender, racial/ethnic, geographic, genetic, and lifestyle factors that interact with an infectious trigger of some kind (for example, one or more viruses or bacteria) to stimulate the autoimmune process.
Multiple Sclerosis
Research suggests that the various types of stress may interact with multiple sclerosis (MS) in different and sometimes contradictory ways. Even though people use the term stress a lot — “I’m so stressed” or “The stress is really getting to me” — they’re actually referring to many different kinds of experiences.
As challenging as it can sometimes be to have multiple sclerosis (MS), parents say that it’s even more difficult when your child has it. No one ever wants anything bad to happen to their kids. When a child is diagnosed with MS — either as a youngster or as an adult — parents tend to feel overwhelmed with a lot of feelings, including anxiety, guilt, and anger.
Depending on your multiple sclerosis (MS) symptoms, the kind of work you do, and the environment in which you work, you’re bound to run into challenges along the way. Some of these challenges may be related to your symptoms, and others may have more to do with attitudes (yours and other people’s) about your MS.
Multiple Sclerosis
Maintaining a healthy partnership can become especially difficult if multiple sclerosis (MS) progresses significantly. The more disabled a person with MS becomes, the more involved the partner is likely to be in his or her care. Caregiving activities can run the gamut from occasional assistance with daily activities like taking medications, buttoning buttons, and preparing meals to full-time, hands-on care with dressing, bathing, using the bathroom, and eating.
When you have multiple sclerosis (MS), any number of factors can interfere with a good night's rest. Disrupted sleep isn't restful or refreshing — so you probably want to do something about it as soon as possible. The first step in dealing with sleep problems is to talk about them with your doctor. The next step is to work with your doctor to address all the factors that disrupt your sleep.
Multiple Sclerosis
If you have been diagnosed with multiple sclerosis (MS), you might be worried that is signals the end of life as you know it. There are a lot of rumors and misunderstandings about MS out there, and you might have heard some of the ones described here.
But the truth is that life goes on. They might have to make some adjustments, but when people with MS are busy living their lives, other folks may not even know that they have MS.
Multiple Sclerosis
If you become so preoccupied with your multiple sclerosis (MS) that it’s all you think or talk about, other people will follow your lead. They may happily talk about nothing but MS for a while, but eventually most will get bored with the subject and start to distance themselves from you.
Even though MS is probably the biggest thing on your mind, it’s important to remember that the people close to you still want to connect with the you they knew before.
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