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10 Tips for People Newly Diagnosed With Multiple Sclerosis
Recently diagnosed with multiple sclerosis? These tips can help you prepare for what's ahead.
By Jan Sheehan
Medically Reviewed by Samuel Mackenzie, MD, PhD
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A multiple sclerosis diagnosis can be frightening and overwhelming, but while you may feel very much alone, you are by no means the only one dealing with this condition.
Multiple sclerosis is the most common neurological disease in young adults, usually striking between ages 20 and 40. An estimated 400,000 people in the United States and 2.3 million people worldwide have MS — and there’s one new U.S. diagnosis of MS every hour, according to the National Multiple Sclerosis Society (NMSS). The good news: MS symptoms can usually be managed successfully.
“Having MS today is much different from what it was in the past, because we now have a number of new and promising treatments that do a good job at controlling symptoms,” says William Sheremata, MD, professor emeritus of clinical neurology at the University of Miami's Miller School of Medicine in Florida.
Ways to Cope With Your MS Diagnosis
If you’re newly diagnosed with MS, these tips can help you manage the disease.
1. Learn as much as possible about MS. There are many myths and misconceptions about multiple sclerosis, and without the facts, your MS diagnosis can be scarier than necessary.
MS is a chronic inflammatory disease affecting the central nervous system. It is thought to be caused by the immune system attacking myelin, the protective insulation covering nerve fibers in the brain and spinal cord. Myelin is destroyed and replaced by scars of hardened tissue (lesions), and some underlying nerves are damaged, causing a broad range of symptoms.
But MS is almost never fatal, and it is possible to live a fulfilling life with the disease. Your doctor and organizations like the NMSS can help you understand more about MS and stay up-to-date on new treatments.
2. Be sure your MS diagnosis is definitive. MS is not an easy disease to diagnose, so getting a definitive diagnosis can take some time. Various tests may be used to make a diagnosis, including magnetic resonance imaging (MRI), evoked potentials (EP), and spinal fluid analysis (spinal tap), as well as a neurological exam. According to the latest criteria, your physician must do all the following to make an MS diagnosis:
- Find evidence of damage in two separate areas of the central nervous system
- Find evidence that the incidents of damage occurred at least one month apart
- Rule out all other possible diseases and diagnoses
For many people, getting a definitive diagnosis is actually a relief — because they now have a name for unexplained symptoms.
3. Understand that MS symptoms are unpredictable. No two people have exactly the same MS symptoms, and you may have different symptoms from time to time. MS symptoms can include numbness, blurred vision, loss of balance, poor coordination, slurred speech, tremors, extreme fatigue, problems with memory, bladder dysfunction, paralysis, blindness, and more. But these symptoms are unpredictable.
“Over the course of the disease, some MS symptoms will come and go, while others may be long lasting,” Dr. Sheremata says. “It will be different for each MS patient.”
4. Don’t delay MS treatment.After receiving an MS diagnosis, it’s important to start treatment as soon as possible. A number of FDA-approved medications have been shown to lessen the frequency and severity of MS attacks, or relapses, as well as to slow the progression of MS.
“The disease is more likely to progress and possibly lead to disability if you don’t begin treatment early in the disease,” Sheremata says.
5. Track your MS symptoms. Keeping a record of your MS symptoms and how you are feeling will help your doctor determine how the disease is progressing and whether the medications you are taking are working. It will also help you and your doctor recognize a relapse, which is characterized by a worsening of previous symptoms or the appearance of a new symptom that lasts more than 24 hours.
If you’re having symptoms that you think are related to MS, write them down in a log. Include when the symptom happened, details of what it felt like, and how long it lasted.
6. Avoid MS symptom triggers. Extreme fatigue is a common indicator of an impending relapse, which can last for days, weeks, or months. But certain triggers are thought to bring on relapses or make them worse. Stress, lack of sleep, infection, and hot baths or anything else that can lead to overheating can cause a worsening of MS symptoms and may even trigger a relapse.
In some cases, a worsening of symptoms may actually be a pseudo-relapse, in which the symptoms resolve quickly as the body cools down or a minor infection clears up.
Drinking alcohol in excess is discouraged for people with MS because intoxication causes poor coordination and slurred speech, which can compound existing MS symptoms.
7. Find the right doctor for you. MS is a lifelong disease, so it’s important to be under the care of an MS specialist who is a good match for you. The neurologist who provided your initial MS diagnosis may not be the specialist you want to stick with for life. The NMSS Partners in MS Care program can help you locate neurologists in your area (within the United States) with expertise in treating MS. Support groups for people with MS (available through hospitals and the NMSS) are also helpful for getting doctor referrals.
8. Consider complementary and alternative medicine. In addition to taking medication to control your MS symptoms, you may want to consider complementary treatments, such as biofeedback, acupuncture, guided imagery, meditation, massage, tai chi, yoga, and dietary supplements. The majority of people with MS turn to these and other forms of complementary medicine to relieve symptoms, according to the NMSS. Such natural therapies are often used for pain relief, fatigue, and stress.
9. Think about whom you'll tell. Announcing to your employer that you have MS could negatively affect your job security, employment options, and career path. Before disclosing the disease at your workplace, learn about your rights under the Americans with Disabilities Act.
Of course, you’ll want to tell your closest family members and friends, particularly those who know you well enough to notice that something is wrong. But you are not obligated to share news of your MS diagnosis with everyone in your life. Instead, pick the people who will be most supportive and helpful as you learn to live with the disease.
10. Don’t give up hope. Although there currently is no cure for MS, newer treatments can slow the progression of the disease, improving your quality of life and preventing disability. And research is ongoing, with the goal of developing even better treatments in the near future that will stop progression and even restore functions and abilities that have been lost.
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