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MS Basics

The first step to understanding your diagnosis is understanding the answers to the following basic questions.  Together, they form the foundation for all the other information you will be making sense of from here on.  We recommend you spend some time reading through these basics and preparing additional questions that come to mind.  Some of these questions are intended for you to discuss with your doctor/nurse, in which case we’ve given you some background information to help you get your answers.

TurnFirst is an independent, privately run non-profit that has no ties to or sponsorship from the pharmaceutical companies.  Any reference to or support of drug-related treatments are done so solely for the purposes of patient education and are based on clinical evidence monitored and certified by the FDA.


What is MS?
Multiple sclerosis is an autoimmune disease of the central nervous system. The body’s immune system is responsible for fighting off viruses and bacteria. In MS patients, the immune system is confused and some of its cells (“T-cells”) randomly trigger attacks on the protective coating of the nerves in the brain and spinal cord. That coating, known as “myelin,” is vital to the nerves ability to transmit messages. When it is under attack, damaged, or removed, the nerve cell doesn’t function properly and can die—this process is known as “demyelination.” An area where this damage is done is known as a “plaque” or “lesion”—which is a hard area of scarring that can usually be seen on an MRI. Multiple sclerosis literally means “multiple hardenings.” When doctors are considering an MS diagnosis they are looking for the evidence of these plaques where the nerves have been wounded.
What causes MS?
No one knows what causes MS. There are a lot of theories but no true answers. For years, doctors have looked at many possible causes, including environmental factors, viral infections, dietary factors, and genetics. While that research has yielded a lot of valuable information, we still can’t determine a cause. The current thinking is that a combination of these factors causes MS—which would explain why it’s proving so difficult to figure out. To give you a sense of the complexity of this problem, here are a few interesting facts: MS occurs two to three times more in women than men. It is most common in Caucasians and people with Northern European heritage, but in no way limited to those populations—especially as there is more inter-culture marriage. People who grew up in colder, temperate climates are as much as five times more likely to develop MS. Recent studies have suggested that Vitamin D play an important role. In short, it’s a mystery we are still trying to figure out.
Is there a cure?
There is no cure for MS; however, the past decade has brought new treatment options that have proven to be significant in fighting the disease and slowing it down. Sometimes MS seems to “burn itself out” after a period of time, but there is no way of really knowing when and if that is the case.
What kind of MS do I have?
Make sure to ask your doctor this question. There are four main types of MS: (1) Relapsing Remitting is defined by periods of exacerbation followed by periods of remission and recovery. (The majority of MS patients experience this form of the disease.) (2) Primary Progressive is defined by chronic disease activity with no distinct remissions although there may be temporary plateaus or minor relief from symptoms. (3) Secondary Progressive is defined as a relapsing and remitting pattern that later turns into primary progressive. (4) Progressive relapsing is a rare form of the disease where a patient has chronic activity that also has marked periods of acute exacerbation. In addition, 20 percent of the MS population has a benign form of the disease in which symptoms show little or no progression after the initial attack; these patients remain fully functional. A few patients experience malignant MS, defined as a swift and relentless decline resulting in significant disability or even death shortly after disease onset. However, MS is very rarely fatal and most people with MS have a normal life expectancy. (Source: National Institute of Neurological Disorders and Stroke)
What is an "exacerbation", "relapse" or "attack", and how do I know if I am having one?
These terms all define a period of time when symptoms suddenly appear or become significantly worse. Doctors consider an exacerbation an onset of new or worsening symptoms due to a new lesion or area of disease activity. It is important to notify your doctor of any new symptoms or worsening right away. They will help you determine what is going on and how to address it. In relapsing forms of MS, the body will have stretches of time when you are experiencing symptoms and then quiet times when you feel relatively “normal.” During those quiet times the body can heal some or all of the damage and your symptoms may improve dramatically. This is a process known as “remyelination.” A lot of the current research, by groups like the Myelin Project, is focused on how to foster that process. The body’s ability to heal can be truly amazing. Plenty of veterans of MS will tell you that they have recovered from severe exacerbations and gone on to do all kinds of things they didn’t think were possible. Some exacerbations are followed by partial recoveries. When these add up over time, they can create “accumulated disability.” This is one of the chief reasons to begin on a disease-modifying drug protocol right away. The current drugs demonstrate an ability to reduce the frequency of exacerbations, the severity/number of active lesions, and the accumulation of disability. A few are also are thought to help protect the nerves during an exacerbation. In progressive forms of MS, there are few or no defined exacerbations with remissive periods of recovery. This chronic disease activity requires a different approach to treatment. There are a number of options that have proven to help alleviate symptoms and/or improving function.
What causes an exacerbation?
An exacerbation can happen anywhere at anytime and for no reason at all. There is some evidence that major changes in health (such as a serious illness, injury, trauma, surgery, or pregnancy/childbirth) may precede or contribute to an exacerbation, but those changes in no way ensure an exacerbation will occur. Usually there is no rhyme or reason.
Is MS contagious?
No. It is not contagious in any way.
Is MS genetic? Can I pass it to my children?
Scientists believe that MS is the result of a number of factors rather than a single gene or other agent. The evidence suggests that genetics play a role in determining a person's susceptibility to MS, but we don’t know what that role is yet. According to the National Institute of Neurological Disorders and Stroke, in the population at large, the chance of developing MS is less than a tenth of one percent. However, if one person in a family has MS, that person's first-degree relatives (parents, children, and siblings) then the chances of getting the disease increase. Other factors that come into play may be environmental and/or exposure to certain viruses. It appears that a combination of factors determines whether someone develops MS. As Dr. Heidi Crayton says, "If a parent has MS, chances are less than 3% that a child will develop MS. If a sibling has MS then chances increase to 20%. Genetics are involved in predisposition but MS is not a directly inherited condition (several other factors come into play)."
Can I die from this?
MS has no effect on your life expectancy. It is very rare for a patient to die from MS.
Will I become disabled?
Past studies reported that 15 years following diagnosis, patients had a 40% probability of needing some form of walking assistance and a 25% probability of being in a wheelchair. However, with more patients on disease-modifying therapies, we expect those numbers to change in the years ahead. For example, in long-term studies on patients taking Copaxone, more than 80 percent of patients were able to walk unassisted following 15 years of treatment and average disease duration of 22 years. In addition, the majority of patients experienced either stable or improved disability rates, as well as a 78 percent reduction in annualized relapse rate (ARR) from baseline. So be careful about believing statistics. Every year treatments improve. And studies show that the sooner patients get on a therapy the less likely they are to develop disabling symptoms.
How did you determine my diagnosis?
The average patient waits one to two years from the time of their first symptoms until they are diagnosed. This is mostly true because symptoms present themselves differently in each person and doctors are looking for a pattern of symptoms over time. A minimum of two distinct “events” (exacerbations) is needed to consider an MS diagnosis. The diagnostic process includes physical exams that check for changes in strength, coordination, reflexes, sensation, vision and balance. It also involves blood work and at least one MRI. Occasionally, doctors will test a patient’s spinal fluid. These things are necessary to rule out a host of possible other conditions whose symptoms are similar to MS.
Have you ruled out other possibilities? What were they?
Before your doctor made your diagnosis, s/he should have ruled out conditions such as Lyme Disease, low vitamin B12, Lupus, Guillain-Barré and HTLV-I (human T-lymphotropic virus—a retrovirus that causes adult T-cell leukemia.)
Who could I see for a second opinion?
If you have any uncertainty about your diagnosis, you should consider a second opinion. Look into making an appointment with a medical center that specializes in MS and be sure to bring your medical file will you, including MRI images if you have them.
What are the symptoms?
MS symptoms vary from person to person, including the nature and location of the symptoms and the severity. Common symptoms that seem to be hallmarks of MS, include: • numbness in the skin, hands, and/or feet; • “pins and needles” sensations in different parts of the body; • double vision or blind spots in vision; • weakness in the limbs (often on one side and/or feeling like your legs are heavy as if you’re walking in water); • impaired balance and coordination; and • an increased sensitivity to heat (i.e. symptoms worsen when you’re hot and improve when you cool off.) Fatigue and depression are also common symptoms of MS, but are two of the more difficult to quantify and attribute, because it can be hard sometimes to know if they are caused by the MS or an effect of having MS (and a busy life.) As you do your research, you will proably see a lot of lists of symptoms, some of which may scare you. Please remember that these lists are often “laundry baskets” that include every symptom attributable to MS. The fact it’s on the list does NOT mean you will have that symptom. In fact, with the current treatments and the new ones in production, it is likely that people who are diagnosed today will experience far fewer of the more severe symptoms then people did even five or ten years ago. The science shows that the sooner patients start on a disease modifying medication the fewer exacerbations they have, which means fewer symptoms and slower progression.
Why do I have these symptoms?
Simply put, the messages are not getting from the brain to the body. Think of your central nervous system like a super highway—all it takes is one car to break down in a lane to slow down traffic. When the nerves in a particular pathway are damaged then the part of the body they connect to suffers from a lack of information. Heat can contribute, temporarily, to the presence or severity of symptoms because nerve transmission is less efficient and requires more energy at higher temperatures. As you heat up, the information slows down. Also, in some cases, the symptoms are indicative of the presence of an active lesion. The inflammation around a lesion can irritate the nerves and trigger odd sensations (known as “Lhermitte’s”) and sometimes pain. Some symptoms can be addressed through medication. Talk to your doctor about what is bothering you most and explore your options.
How do my other health issues affect my MS and vice versa?
There is no question that MS adds a new wrinkle to managing your overall health. Just how MS factors into that picture is a puzzle your doctor needs to solve. For example if you have thyroid issues and MS, is your fatigue related to the level of your thyroid medication or your MS? Is the numbness in your feet from your diabetes or your MS? How will the medications or treatments you take for an existing condition affect your MS? Ask these questions and work with your medical team to figure out the answers. It may take some time to sort it out. In these cases, it is all the more important that your general physician and/or specialist works with your neurologist to coordinate your care.
How will this affect me in the future?
No one can answer this question for you. There is a lot of uncertainty with MS and sometimes that’s the hardest thing to get used to. But there are also a lot of reasons to be hopeful. The fact is these days—with the great strides in research and treatment—the majority of people with MS can live full, active lives. The more you know and the more committed you are to your health and treatment, the better you are likely to do in the long run.
What can cause this to get worse or better?
The more you know and the more committed you are to your health and treatment, the better you are likely to do in the long run. MS is unpredictable. We each just need to do the best we can. The current disease-modifying drugs demonstrate an ability to reduce the number of exacerbations, the severity of exacerbations and the disease activity overall. A few are also are thought to protect the nerves during and exacerbation. These are the only options we can definitively point to and say they can make a positive difference in the course of the disease.
What should I do next?
Get the information you need to make sound decisions for your healthcare and put together a good team of medical professionals, friends, and family to support you.
What treatments are available to me?
There are six disease-modifying drugs on the market as of November 2007 and more in the research and development pipeline. While none are a cure, they do demonstrate an ability to reduce the number of exacerbations, the severity of exacerbations and the disease activity overall. A few are also are thought to protect the nerves during and exacerbation. There are also a variety of treatments available to address symptoms.
What are the risks?
The current disease-modifying drugs have all been tested for safety and are approved for use by the FDA. They each have their own protocol and list of notations about possible side effects and risks. (That is common for all medications these days, including Tylenol.) By and large these drugs are well tolerated by most people. Some may have flu-like side effects or injection-site irritation. Two drugs, however, Tysabri and Novantrone, carry more serious warnings. So be careful to understand the risks and the protocol—along with the possible benefits—before you start. It is important to talk to your doctor about the potential risks of your treatment options. Ask them what the primary considerations should be in his/her recommendation of a treatment. It is also helpful to know what the potential short- or long-term side effects might be or any complications related to other medications or conditions you have. There is more information about the risks associated with disease-modifying drugs under An Overview of the Primary MS Disease-Modifying Drugs [PDF] .
When do I have to decide what to do for treatment?
Not today or even next week, but the sooner the better. The TurnFirst Foundation joins with the Medical Board of the National MS Society in advocating that disease-modifying drugs are most effective when started early, before the disease has the opportunity to cause significant damage.
What do you recommend I do? Why?
This is a question to ask your doctor. Don’t just accept a list of options; ask them to make a recommendation based on your medical history.
Is there a local or regional medical center that specializes in MS?
There are several ways to find the answer to this question. You can look at the list of centers participating with TurnFirst. Or, Click here for a listing of MS Centers across the country. You can also inquire with the Consortium for MS Centers. Or you can contact your local MS Society to ask for a list of physicians and centers.