10 TIPS FOR THE RECENT DIAGNOSED WITH MULTIPLE SCLEROSIS
To get diagnosed with Multiple Sclerosis is very scary. Normally the person that gets diagnosed with this chronic disease, to this time with no cure, gets very alarmed and scared, trying to understand it's own disease, the possible treatments available and all the implications it will bring.
Another common feeling of newly diagnosed is loneliness. For more united that family and friends can be, it is very common to feel isolated, misunderstood, because there is the need to obtain reliable and accurate information about the disease. In addition, some questions can only be resolved through the exchange of experiences with other bearers of Multiple Sclerosis. It is a disease that can manifest in different ways, each person experiences it in a way, with a diversity of symptoms and intensity, which makes it even more difficult for a person that doesn't have the disease, to fully comprehend and be empathetic.
Unfortunately, in Brazil, the constant accurate and reliable information on the Internet are insufficient. I say insufficient because, for those who have been diagnosed, it is very difficult to be content with little. I especially like to read scientific articles and constantly updated official websites, because the absurdities we read there are so many. You need a good filter.
As a starting point, here are 10 important tips for a newly diagnosed Multiple Sclerosis patient to cope better with the disease, flicking through its toughest stage: acceptance.
1. Learn all you can about Multiple Sclerosis: There are many myths and misconceptions about Multiple Sclerosis, and without the hard facts, the diagnosis can be much scarier than it should be. Multiple Sclerosis is a chronic autoimmune disease that affects the central nervous system. It is caused by the immune system attacking the myelin, the protective insulation covering nerve fibers, in the brain and spinal cord. The myelin is destroyed and replaced by scars of hardened tissue (lesions), causing damage to some of the underlying nerves. But MS is not a fatal disease, and many of those diagnosed with the disease can get around without a wheelchair for life. Your doctor can give your prognosis and the facts and latest news on Multiple Sclerosis. Also, seek reliable sources and sites for research (following some websites listed in "Favorites" on the home page).
2. Make sure your diagnosis is definitive: Multiple Sclerosis is not a disease easily diagnosed, so the delay in receiving a definitive diagnosis can harm the initiation of treatment. Several tests are used to "close" the diagnosis, such as MRI, visual evoked potential, CSF, and laboratory and neurological examinations. Currently, in order to complete the diagnosis of Multiple Sclerosis, the neurologist should be aware of the following criteria:
Find evidence of damage in two distinct areas of the central nervous system;
Find evidence that the damage occurred at least a month before;
Rule out all other possible diseases and diagnostics.
For many people, receiving a definitive diagnosis of MS may be a relief, since unexplained symptoms start to get a name and a treatment.
3. Understand that the symptoms of MS are unpredictable: No two people with MS will have exactly the same symptoms, which may vary from time to time. Symptoms may include numbness, blurred or double vision, loss of balance, lack of coordination, slurred speech, tremors, extreme fatigue, memory problems, bladder dysfunction, paralysis, blindness, depression, and many others. But these symptoms have one thing in common: they are unpredictable. During the course of the disease, some symptoms of multiple sclerosis may come and go, while others may have long-lasting effects. It will be different for each patient with Multiple Sclerosis.
4. Do not postpone MS treatment: in our times, the goal of the treatment is to control MS symptoms and improve the quality of life of its patients. After receiving confirmation of the diagnosis, it is important to start treatment as soon as possible. A number of medicines in Brazil, ANVISA approved and provided by the NHS, have the aim to modify or slow the progression of Multiple Sclerosis and reduce the frequency and severity of outbreaks. It is more likely that the disease will progress, and lead to disability, if the patient did not start treatment in the early stage.
5. Follow the symptoms of Multiple Sclerosis: Keeping a record of your symptoms and how you are feeling will help the doctor determine how the disease is progressing, as well as the medications you are taking are having an effect. This will also help the physician recognize an outbreak, which is characterized by a worsening of previous symptoms, or the appearance of one (or more) new symptom that lasts more than 24 hours. Thus, it is important to keep this report up to date and be precise about the duration and intensity of symptoms.
6. Avoid the "triggers" of outbreaks: Extreme fatigue is a common indicator of a relapse or impending outbreak, which may last for days, weeks or months. But apart from fatigue, certain "triggers" are known to cause outbreaks or have existing symptoms worsen. Stress, smoking, infections and fevers, hot baths, too much exposure to the sun and muffled locations with high temperatures, demonstrably contribute to the worsening of symptoms and outbreaks in Multiple Sclerosis. Furthermore, consumption of excess alcohol is not recommended for patients with the disease, because intoxication can cause lack of coordination and slurred speech, which can worsen or add to pre-existing symptoms of Multiple Sclerosis.
7. Look for the right doctor: MS will accompany you for the rest of your life, so it is important to be under the care of a good specialist in the disease, in whom you trust and feel good. The neurologist who diagnosed you may not be the expert with whom you want to stay. Therefore, seek medical experts in your region and, if not possible, consider traveling to find a good doctor you trust and with whom you feel comfortable. Support groups for patients with Multiple Sclerosis (available through hospitals and organizations) are also useful for obtaining medical references.
8. Consider alternative and complementary medicine: In addition to taking the specific medication for Multiple Sclerosis, you can consider alternative and complementary therapies, such as physiotherapy, acupuncture, meditation, massage, yoga and dietary supplements that may help you get along better with the symptoms and prevent disease progression. More than 30% of people with Multiple Sclerosis turn to complementary forms of medicine to relieve symptoms, according to articles published in scientific journals. These natural therapies are used by most MS patients for pain relief, control of fatigue and stress. It is also important that every patient with Multiple Sclerosis practice a physical activity that do not expose it to too much heat. The doctors recommend swimming as the best sport, however, only you will know the limits of your body and what activities make you feel more comfortable.
9. Consider first whether and to whom you want to talk and comment about Multiple Sclerosis: Once you make your employer aware that you have Multiple Sclerosis, can affect your job stability, employment and career options. Before disclosing the disease in your workplace, learn about your rights. Of course, you'll want to talk about the disease with your closest friends and family, especially those who know you well enough to know that something is wrong. But you are not obliged to share the news of the diagnosis with everyone in your life. Especially at the beginning, while your psychological is still very affected, it is important to disclose the disease and to choose the people who will be more supportive and helpful at this early stage, helping you to learn how to deal with the disease. With time, and for most people (everyone reacts in a different way), acceptance of the disease will allow you to talk about it more naturally, and it is important that you have someone who you can share afflictions and uncertainties, even if you have already accepted live with a chronic disease like this, not all days are good, either physically or psychologically.
10. Do not lose hope: This is a tip that I consider most important. Although there is currently no proven cure for Multiple Sclerosis, new treatments and advances in research can enhance healing and relieve symptoms, making living with the disease very peaceful. Because Multiple Sclerosis reach as many people in the prime of life (between 20 and 40 years), scientists are racing to find a cure, and a number of new treatments are currently under investigation. Moreover, it is important to keep in mind that MS should not manage your life. It is fully possible to live well with the disease, making the monitoring and treatment needed. Remember, you still have a lot to live for!!!