I was diagnosed with MS and have heard that "acceptance" of the disease helps in dealing with it. What would be considered as accepting it and how do I know when I have?
“Acceptance” is a misunderstood word. Individuals often feel that if they accept the disease it means they have given in to it. A healthy way to think of “acceptance” is to appreciate that it comes with the hard work of mourning the loss of health, sense of self or other MS-related change. This work takes time but with acceptance one is able to get on with learning to live well with MS.
With acceptance comes the realization that the diagnosis is outside of your control. You do, however, have control over your health and choices about how to react to the changes that come with MS. Knowing what is most important and using your health and energy to go after your most important goals is essential to life satisfaction.
How do you know when you have accepted your life with MS? Remember that acceptance is an ongoing process. Change and loss can send you backwards on the path of acceptance.
Reacting emotionally from time to time is a normal response. Living with MS can be frustrating and emotional responses are legitimate. With acceptance, however, you no longer experience the depths of depression, anger and bitterness on a regular basis. You are optimistic about your future but know that you may have to alter some plans to accommodate your MS. You are able to adjust goals in work, leisure-time activities and relationships to match your abilities.
With acceptance you are able to accept help from others graciously while finding your own way to reciprocate. You maintain a positive self-image and realize that there are new and different ways to successfully fill the roles of spouse, parent, co-worker, or friend.
Attending to your health is a huge responsibility. We take our health for granted until something goes wrong. Acceptance includes finding ways to maximize one’s health and to search for resources that help maintain as much health as possible.
Although it is a huge challenge and at times a burden, MS does not define who you are. Perhaps most important, you know you have accepted the diagnosis when it is no longer the focus of your life.
Once I have been diagnosed, how will I know what kind of MS I have?
Once the initial diagnosis of MS is made, it takes time to determine whether a person has relapsing-remitting or progressive MS. In the relapsing-remitting type, the symptoms and physical impairments improve after a few weeks/months, and the physician can be more assured that it is relapsing-remitting. In progressive MS, the symptoms/physical impairments do not improve and gradually worsen with time. For more information please visit Types of MS.
My partner has just been diagnosed and he/she wants to end our relatively new relationship on the basis that he/she will be holding me back. Is this a normal reaction?
Questioning the viability of a relationship is a very normal reaction when someone is first diagnosed and also in later stages of the disease process as the person with MS faces new challenges and /or increasing disability.
Adjusting to a diagnosis of multiple sclerosis can be frightening and stressful. It is not unusual for individuals to imagine the worst possible outcome. Initially, they may feel a loss of control over their future. Out of love, concern or respect, they may feel an obligation to protect loved ones from the pain and difficulties they expect to experience. They may believe that the best solution is to end a relationship. This is especially true for individuals in relatively new relationships but sometimes it also happens in marriages.
Why do newly diagnosed individuals respond this way? Individuals are often emotionally overwhelmed by the diagnosis. Some say that they want to end a relationship in order to give their partners permission to leave. Others are concerned that their partners are staying with them out of pity. Some individuals fear that the partners will be supportive for the short term but will eventually leave. These individuals want to avoid the pain that they view as inevitable.
Regardless of motives, your partner needs time to learn more about how MS will affect them personally. It is important for you to also learn about MS and to assess your true feelings about the impact of your partner’s illness on you and your relationship. Those who find the patience to move through this period of adjustment slowly are less likely to make spontaneous, regrettable decisions.
With education about the variability of MS and the fact that many people live well with the diagnosis, the process of acceptance begins. Many individuals reassess the importance of a supportive, loving relationship. If you are committed to the relationship at this point, you will find that you play a significant role in the adjustment process. Here are some ideas for you to consider:
- Keep the lines of communication open but give your partner space if they need it. Offer to take things more slowly as you both learn about the changes that may occur with MS.
- If there is an educational program through the MS Society or your MS Clinic for newly diagnosed individuals and their partners, suggest that you go together.
- Take your cues from your partner in terms of when they need to be alone and when they want your support.
- Know that you can’t rescue them from the initial feelings of depression, worry or anger. They need to process the information on their own time line and in their own way.
- Be a good listener. Validate their feelings without giving advice unless asked.
- Remember that people cope differently. What might work for you in times of stress may not be their style. Let them know what works for you without an expectation that they need to do things the same way.
- Life doesn’t offer any guarantees but you can be a great help during this difficult time of adjustment. Let them know you would like to take on the challenge together.
How often should I schedule an appointment with my neurologist for a checkup?
There is no set amount of time for regular follow-up visits with a neurologist. The frequency of follow-up often depends on whether a diagnosis has been confirmed, whether any further testing is needed, and the symptoms being experienced.
If your neurologist works in an MS clinic with a multidisciplinary team you often can have more frequent contact with a nurse or social worker who can deal with many of the concerns of an individual newly diagnosed with MS and their family. Common issues they can help with include understanding the diagnosis and its symptoms, adjusting to the diagnosis and the changes in your health, making decisions about starting on treatment, planning for the future with an uncertain disease and learning self-care skills to manage this long term illness.
During a relapse of symptoms, a visit to the MS clinic team can usually be scheduled between regular follow-ups. Many MS clinics work in collaboration with primary care physicians who can also provide care and follow-up. I would suggest discussing with your Neurologist the questions and concerns that you have as there may be other health professionals who can provide the support you need.
How long is an MS attack supposed to last? I know that everyone's MS is different, but I am not sure what to expect.
An MS attack – also known as a relapse or exacerbation – occurs when the immune system becomes overactive and attacks myelin, the protective coating on the nerves. Although the symptoms may be similar to ones experienced in the past, during an attack the disease is inflicting new damage, which may or may not be permanent. A pseudo-relapse or flare-up of residual ('souvenirs' from previous attacks) MS symptoms can be easily mistaken for an attack.
To distinguish, neurologists look at the following factors:
- Symptoms have continued for at least 24 hours.
- There are no other factors – such as infection, unusual fatigue or hormonal fluctuations – that could cause a flare-up of existing symptoms.
To be considered a relapse, the symptoms must appear after at least 30 days of stabilization or remission from a previous relapse, and symptoms must be present on a continuous basis for at least 24 to 48 hours, though typically MS relapse symptoms last weeks. Relapses usually go through three stages: acute inflammation, when the symptoms are getting worse; stabilization, when the symptoms remain the same; and repair, when the person’s condition gets better. The whole process can actually take anywhere from a few weeks to a year. If a person seems to recover but then within a month has another flare-up of symptoms, that’s considered to be the same attack.
You are right, MS can be unpredictable and everybody seems to be different or to react differently, however there are certain patterns that are somewhat common. Thus, most people can expect stabilization of the symptoms of a relapse will happen in a matter of a few weeks to a few months. Unfortunately nobody can be more precise or predict exactly what is going to happen in MS.
I always feel that a new symptom is an emergency. How do I know when it is important to call the doctor?
It is difficult for most people to fully understand what a relapse is, since it does not always present itself in the same way. A true relapse is characterized by the onset of new symptoms or old symptoms that last 24 to 48 hours or longer. There is therefore a neurological manifestation that is expressed through symptoms such as itching, numbness, as well as trouble with vision, balance or walking. From a medical perspective, emergency medical care is not required, since even though treating a relapse may accelerate remission, it will nevertheless not have a long-term effect on the progression of the disease. However, certain factors may aggravate multiple sclerosis symptoms, such as fatigue, the premenstrual period and an infection. This is referred to pseudoexacerbation.
There is currently only one treatment available for multiple sclerosis relapses, which is the administration of high doses of steroids in order to speed up the reduction of symptoms. However, because steroids have side effects, this type of treatment is not always used, and the treatment path followed often depends on the attending neurologist and on the severity of the relapse.
One important factor to consider when a person decides to consult his or her neurologist for the onset of a new symptom is the monitoring and knowledge of the patient’s progression. Knowing the number of relapses, their severity and their frequency will help the neurologist better treat the patient. Thus, a user who is taking an immunomodulator, but who continues to experience relapses more frequently than expected, will provide the physician with information on the effectiveness of his or her treatment.
Another point to consider is that a person who presents a new symptom may be experiencing anxiety, and discussing these issues with a physician may help ease the person’s anxiety as well as reassure him or her. Most MS clinics offer a specialized nursing service that can help you with your self-assessment regarding the onset of symptoms related to your disease.
In the case of a pseudoexacerbation due to a urinary infection, for example, simply detecting the problem may help avoid other complications. Recently diagnosed individuals or people who are experiencing intense or uncertain symptoms or extreme anxiety may feel they need to see a doctor. Finally, another important point is that a user with an uncertain diagnosis of multiple sclerosis or an isolated clinical syndrome (only one documented relapse) may help the physician by identifying the onset of a new symptom. Knowledge of this new element may be used to confirm the diagnosis for this person.
Will MS affect my ability to get pregnant?
MS does not affect women’s fertility. However, some drugs used to treat MS may have an effect on the menstrual cycle; and some medications are unsafe during pregnancy. If you are taking any medications, and you decide to try for a baby, the usual advice is to wait at least three months after stopping treatment before trying to conceive. It is important to discuss your medications with your doctor before making any changes as it can be dangerous to stop taking some medications suddenly.
In addition, research data has shown that, as a group, women with MS who become pregnant do not experience any more disability in the long term than women with MS who never become pregnant. Because the hormones of pregnancy offer approximately the same level of protection against disease activity as the currently-approved disease-modifying medications, women with MS tend to experience fewer relapses and feel better during pregnancy—particularly during the second and third trimesters. During the three to six months following the pregnancy, however a woman’s risk of exacerbation goes up as the level of pregnancy hormones goes down. A woman whose disease was particularly active in the months prior to the pregnancy might decide to resume her disease-modifying medication immediately after delivery, in order to maximize her protection and reduce the risk of future attacks. Women who wish to breastfeed should not resume their medication until they have stopped nursing.
MS itself does not affect sperm production in men. However, some men with MS may experience erectile problems and difficulties with ejaculation. There are also some treatments for MS that have been reported to lower sperm counts, and some symptomatic treatments, including antidepressants, can affect ejaculation. There are, however, various methods to allow sperm to be collected and used for insemination.
We know that the risk of developing MS in the general population is approximately 1/750. We also know that the risk is higher for a child who has a parent—approximately 1 in 40, and higher if there are several other family members with the disease. Parents with MS can and do have happy, healthy children. This is a topic that should be discussed further with your doctor.
I live a very athletic lifestyle by weight training, cycling and hockey. Do I have to cut back on the frequency or intensity of my workouts?
There have been numerous studies that show the general medical benefit of physical activity, and that lack of physical activity contributes to diseases such as obesity, diabetes, hypertension, and coronary and cerebrovascular disease.
In MS, controlled studies have confirmed the benefit of staying active on physical, emotional, and social well-being. Recently, the Canadian Physical Activity Guidelines for Adults with MS were developed as a tool for making exercise recommendations or developing exercise programs. The guidelines include recommendations for aerobic and strength training activities, however, as with all physical activity programs, medical clearance is essential with periodic checks throughout the exercise program. We encourage participation in any activities that you enjoy, including sports of all kinds (including weightlifting, hockey, cycling).
Cautions in MS include overheating, dehydration, exhaustion, and falls. Moderate elevations in core temperature may be associated with transient minor symptoms (numbness & tingling, blurred vision) that have no lasting negative effects -- this may limit duration of exercise. Many people with MS find benefit from swimming exercises (deep water running, aquacise, laps) yoga and pilates.
Overheating can be countered by wearing loose clothing, being in front of a fan if stationary, drinking lots of cold fluids, and using cooling garments (neck or head bandanas). Over-exercising may increase fatigue; however, in the long term, regular physical activity decreases fatigue and improves sleep.