If you recently received a multiple sclerosis (MS) diagnosis, an important next step is to learn as much as you can about the condition. Knowledge is powerful when it comes to caring for yourself.
While MS is often unpredictable, you can help yourself prepare for possible challenges in the future by gaining knowledge now. Here are 14 facts that are essential for you to know following an MS diagnosis.
1. MS is a chronic disease
MS is a chronic, inflammatory disease that damages myelin, a fatty substance that covers and protects your nerve cells. The damaged myelin leaves nerve cells, or axons, exposed.
Exposed axons can’t move electrical impulses as efficiently as covered ones. This can affect how well your brain can move signals through your central nervous system (CNS) to other parts of your body. This can cause symptoms such as loss of coordination, muscle stiffness, blurry vision, and tinging or pain in parts of your body.
2. There are multiple types of MS
There are four main types of MS:
- Relapsing-remitting MS. This is the most common type of MS. People with this type have attacks of new or increased symptoms followed by periods of remission. There is no progression of the disease between attacks.
- Primary progressive. In this type of MS, people don’t experience attacks, but a gradual worsening of symptoms over time.
- Secondary progressive. People may develop this type of MS after having the relapsing-remitting kind. This means that symptoms begin to get worse over time.
- Clinically isolated syndrome. This refers to one episode of MS symptoms that lasts for at least 24 hours. But people who experience this may or may not develop MS.
Make sure you talk to your doctor about which type of MS you have since each disease course differs and may require different treatment.
3. MS is considered an immune-mediated disease
Like an autoimmune disease, MS causes your body to mistakenly attack the myelin sheaths around your nerves. Researchers do not understand the exact protein the body is trying to attack, however.
Because of this, they don’t classify MS as a true autoimmune disease. Instead, MS is typically known as an immune-mediated disease.
4. Anyone can develop MS
MS can affect anybody, but researchers have found some common risk factors that increase a person’s risk.
Women are two to three times more likely than men to develop MS. Most MS diagnoses are made in people between ages 20 and 50, but several thousand children under the age of 18 also have the disease.
5. MS isn’t an inherited disease
MS doesn’t appear to be inherited or passed from generation to generation within a family. However, there may be some genetic risk factors that make certain people more likely to develop MS than others.
6. Many people live with MS
A recent study now estimates that 913,925 — nearly one million people — live with MS in the United States. In the past, that number was estimated at closer to 400,000. MS is the most common progressive neurologic condition in the world among young adults.
Many people may have MS and not realize it. Symptoms of MS can be invisible. MS activity, including worsening symptoms, can occur without you being aware.
7. There are many symptoms caused by MS
The list of potential MS symptoms and complications is long. Not everyone with MS will experience all of them. Your symptoms may be quite limited.
It’s still important to realize the breadth of possible symptoms so that you can recognize and prepare for them if they occur.
The most common symptoms of MS include:
- pain or tinging in the body
- extreme fatigue
- blurry or impaired vision
- difficulty balancing or walking
- difficulty with bladder or bowels
- muscle stiffness, known as spasticity
- changes in memory or difficulty concentrating
- mood changes
8. MS is unpredictable
Symptoms of MS are different for each person. Periods of disease relapse and remission are different for everyone with MS, too.
The symptoms you experience can even change from time to time. You may experience fatigue and severe tingling or numbness at one point. Soon after, your symptoms may primarily be difficulty walking and muscle stiffness.
9. MS is potentially disabling
MS has the potential to be disabling, but everyone will have a different experience. The majority of people with MS will be able to maintain regular activities, and two-thirds of people with MS will continue to walk. You may need a walking aid like a cane or walker at some point.
Eventually, symptoms of MS like fatigue and balance problems may necessitate the use of a scooter or wheelchair. These devices can help prevent accidents or injuries. They can also help you conserve energy, which may reduce the impact of worsening symptoms.
10. MS is unlikely to be fatal
Most people with MS have a life expectancy that is only about seven years shorter than the general population. With new treatments, improved understanding, and a focus on healthy lifestyle approaches, the life expectancy for a person with MS has been increasing.
Additionally, research suggests the shorter life expectancy may be the result of complications from other medical conditions, like heart disease and stroke. Many of these issues may be preventable with good care and communication between you and your healthcare team.
11. Early treatment can slow damage from MS
The earliest symptoms of MS may be invisible. You may have MS disease activity for many years before you realize it. During that time, MS can still cause damage to your CNS and nerve cells.
Once you’re diagnosed, you should begin treatment to modify, or slow, the damage that’s already occurring.
Current medications can help reduce inflammation. This can limit the amount of damage to axons and may prevent the development of lesions.
12. There are many MS treatments available
Treatment options for MS have grown in recent years, as researchers have identified medications that can “modify” the course of the disease. In other words, these new medications may slow the progression of your MS.
The Food and Drug Administration (FDA) has approved several medications for people with relapsing-remitting forms of MS, and one for primary progressive MS. What’s more, some of these treatments can help people who haven’t responded to MS medications in the past.
Treatment can reduce both the severity of MS attacks and the accumulation of lesions in the brain. In some people, these medications may also slow the progression of damage and disability caused by relapses and worsening symptoms.
13. You may need to see a variety of healthcare providers
Different healthcare providers can help you cope with specific aspects of MS. Depending on your symptoms, you may need to meet with one or more of the following:
- Neurologist: This specialist is trained to treat diseases that impair the CNS, including MS.
- Nurse: Specially-trained nurses can help you find answers to questions, learn about the condition, and support you through the ups and downs of the disease.
- Mental health specialist: MS is a physical disease, but it can lead to mental health conditions like anxiety and depression. You may experience grief, denial, and sadness. A mental health professional, such as a counselor or therapist, can help you cope with the diagnosis, adapt to your changing body, and embrace healthy approaches for the future.
- Physical therapist: This provider can teach you how to exercise, walk, and move while coping with symptoms of MS. They can work with you on balance, coordination, and strength exercises, which may reduce the impact of symptoms.
- Occupational therapist: This specialist is helpful when you need to learn how to adapt in your home and work environments.
- Dietitian: Healthy food choices are important to keep your body nourished. These trained professionals can help you develop an eating plan that meets your nutritional needs.
14. There’s no cure, but research is ongoing
There are currently no treatments that can cure or eliminate MS. But researchers conduct many studies and examinations every year, looking for breakthroughs that may help identify more effective treatments and possibly even a cure.
It’s important to learn as much as you can about your diagnosis after finding out you have MS. Not only can it ease your concerns for the future, but it can help you learn better ways to manage your symptoms. If you have further questions specific to your diagnosis, make sure to discuss them with your doctor at your next appointment.