Multiple Sclerosis: Understanding and Living with the Disease
Mulltiple sclerosis (MS) is one of the most baffling and debilitating neurological diseases. About 500,000 people in the United States are afflicted with it. Worldwide there are more than 2.5 million persons who live with MS each day. MS strikes young people between the ages of 18 and 35, and more women are affected than men. MS is a form of an autoimmune disease, meaning that the body begins to attack itself over a period of time.
The causes of MS are a mystery to researchers, with various theories being studied. It attacks the central nervous system (CNS) with damage to the method that nerves use to communicate with others. The damage is intermittent and may not be evident at all times, leading to some confusion in the symptoms and the correct diagnosis of those symptoms.
Myelin is a fatty covering or coating to the nerves and serves to help nerve impulses travel from one area of the body to another. For example, these impulses may tell your brain that the stove you just touched is hot. In MS, the myelin breaks down either entirely or partially around patches of nerves in a process known as demyelination. Since various parts of the body can be affected, there are a variety of symptoms that can occur either gradually over time or even suddenly.
Nature or Nurture:
While there is a fairly clear genetic link in MS, it’s not time to run out for genetic testing. MS is more common in first or second generation family members, such as siblings or mother/daughters; however, having these genes may never lead to an active case of MS. Most researchers believe that an environmental agent must also be present or even a viral infection in the patient’s past somehow activated the disease in the body. No specific viruses have been pinpointed, but there are several under current study such as flu, measles, and herpes.
Symptoms of MS:
There are so many symptoms, it could take up quite a bit of space to describe them. Physicians categorize the symptoms by the area of the body that is affected by MS. Listed below are the most common categories of symptoms that may appear with MS patients. Keep in mind, however, that these symptoms can mimic other diseases; and just because one or more symptoms are present does not mean that a person has MS. Multiple tests should be performed by not only the patient’s general physician, but by a team of specialists who work closely with MS patients on a regular basis.
Vision – one of the earliest symptoms that may appear are visual effects. Some patients report blurred vision in one or more eyes. Sudden blindness may also occur. Ocular neuritis can be treated and may occur without reference to MS; it may also lead to recurring vision issues in patients who may later develop MS.
Movement – since nerves throughout the body may be affected, movement is a common impairment. Patients with movement issues may report loss of muscle strength or lessening precision on movements. The patient may have trouble holding on to items or difficulty making precise movements such as buttoning a shirt. Balance and coordination problems can also be present.
Sensory – many MS patients report intermittent issues with numbness or tingling. There may also be issues with sensitivity to heat or cold.
Bladder – constipation and even loss of bladder function can develop. Urinary tract infections may be present, especially recurrent infections.
Cognitive – trouble concentrating or memory issues may be present. Depression is also common in MS patients. Physicians aren’t certain if the depression is caused by the MS or is a by-product of the patient’s coping mechanisms with the disease.
Fatigue – patients may report moderate to severe fatigue.
Types of MS:
As with many diseases, there are several types of MS that have been identified. The most common type is Relapsing-Remitting or Exacerbating MS. This type of MS affects approximately 85 percent of people who have been diagnosed with the disease. It continually baffles researchers since there seems to be no rhyme or reason for a person’s relapse. Symptoms may come and go repeatedly over a long period of time and may not worsen. The patient may take several days, weeks, or even months to recover from a particular episode. Some symptoms may even disappear completely and not recur for extended periods of time.
Primary-Progressive MS is seen in a markedly less percentage (around 10 percent) of those who have been diagnosed. Symptoms in this type of MS more than likely worsen over time and new symptoms may appear as well. Persons who develop MS after the age of 40 are more likely to have Primary-Progressive MS. There isn’t a definite relapse and recovery perio.
Secondary-Progressive MS appears after the Relapsing-Remiting stage and the patient sees that symptoms appear to worsen over time without any type of recovery at all. The decline may take years to be noticeable.
The fourth type of MS is Progressive-Relapsing. It is the least common form of MS. Patient’s symptoms steadily decline or worsen and while there may be some recovery, although it is not likely.
There are several methods used to treat MS, although none of them will completely cure the disease. Since MS is often a diagnosis of exclusion, meaning that other diseases that could have similar occurrences of symptoms have been ruled out, it can be difficult to treat just one area of the disease. Often the treatments that are given combat only specific symptoms, such as bladder issues, and not just the MS itself.
There are some medications designed to treat only the MS-related symptoms. Drugs that are designed to target the breakdown in myelin may reduce flare-ups and decrease the intensity of these attacks for a period of time. They may also become less effective over time. Clinical trials can be a good way to find out about the latest medications being studied.
Other drugs are used to keep the person with MS functioning as well as possible. These drugs can include medications like corticosteroids to reduce swelling in muscles and joints. There are quite a few serious side effects of using corticosteroids on an ongoing basis, so physicians generally prescribe these during acute flare-ups. Other medications may be used to reduce muscle spasms and preserve muscle elasticity.
Physical therapy is an excellent method of treatment for the MS patient and one that the family can be involved with as well. Physical therapy can be done, not only under the supervision of a trained therapist, but also at home. The patient’s family can also keep tabs on someone’s progress with particular exercises and pinpoint trouble spots that need additional attention or treatment.
Coping with MS:
Stress is one of the biggest enemies of MS since it can exacerbate existing symptoms or hasten the onset of new ones. Like any other chronic disease, living with MS presents challenges not only for the person who is afflicted, but for the immediate family. Since MS most often strikes persons who are very young, it may be especially difficult to learn to cope with an illness. Young people often think of themselves as immune to a chronic disease and, when faced with one, are ill-equipped to cope with the onslaught of issues that it brings.
One of the first things that can help reduce stress is to gather a strong support system. A support system can be as few as one person or as many as someone’s extended family members, colleagues, and friends. There are also support groups available to the family, and the family’s physician can be a good source for these referrals.
Another person to include in the support system is the physician and his office staff. Health professionals can provide the valuable tools a patient needs to learn to cope with MS in a positive and healthy manner. Since MS affects so many areas of the body, a team of health care professionals may be involved in providing care. It is important to keep each member of the team connected to the overall treatment plan and its effectiveness between visits. An open dialogue of these areas will help formulate and revise treatment options and keep patients and their loved ones better informed as the disease progresses.
Diet and exercise are great companions to the ongoing treatment of MS that also contribute greatly to someone’s overall sense of well-being. Exercise has been prescribed for many depressed patients and may help overcome or alleviate depression symptoms in MS patients. In addition, staying active can increase a person’s motor control and keep muscles as flexible as possible. Diet should be discussed with a nutritionist and can help keep weight down and alleviate bowel issues that can also be associated with MS.
Many young couples find that their sex life is greatly diminished by MS, although it is not certain whether or not it is a direct or indirect side effect of the disease. Since sexual arousal originates in the central nervous system, the body may not always send the appropriate signals during times of intimacy. As a result, sex drive may be diminished, orgasm may be difficult to achieve, and there may be a host of other issues. In addition, fatigue (both physical and mental) may play a significant role in the loss of overall sex drive. Couples who find that these issues are beginning to take a toll on their relationship should talk openly about it and find effective ways to communicate about their sex life, despite MS and its troubling side effects.
The first place that patients tend to look for support is through their health community. While this is an excellent resource and the most trusted place for medical advice, it may not be the best place to find emotional support. There are a variety of community-based organizations that can help with ongoing issues.
The National Multiple Sclerosis Society (www.natioanlmssociety.org) has an excellent website with educational links for both the patient and the family member. While most people with MS can still take care of their daily needs, there is the possibility that individuals will need help with specific tasks. Caregiving can take its toll on young couples and relationships, so it is important to find support and keep communications flowing.
Parents who have MS
may need help talking to their children about the disease and how it
affects the family unit. Children are remarkably resilient, but they
may ask for news of the disease, even if there are no visible
symptoms. The National MS Society has a special corner for children
that includes educational games and resources that parents can use to
help the family better understand the disease. There are also local
chapters of the national office that can work with individuals.
Other resources in the community may be needed to provide care during flare-ups or as the disease progresses. These may include home health care agencies, support groups,low-cost medical care for those who need health insurance (or who may have lost it recently due to a job change or loss), and even caregiver respite care. In more than 75 percent (and growing) of the U.S., 2-1-1 is the phone number to call to locate community-based organizations. To find out if there is a 2-1-1 located in your community, search www.211.org. The website has a search engine using zip code, city or state to find the agency that serves a specific area.
The bottom line to living with a chronic disease like MS is to understand as much as possible about the disease and how it affects someone. Since the disease strikes when someone is young, the impact on relationships can be far-reaching. Open communication will help the patient formulate a plan of action and make informed choices concerning their care. This same communication can help facilitate support for the patient’s extended support network.
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Jude Roberts is a Staff Writer for Today's Caregiver Magazine, caregiver.com and the Caregiver Newsletter. You can subscribe to the magazine or receive their free newsletter by going to caregiver.com and signing up.