Newly Diagnosed? Your Journey Starts Here.
Multiple sclerosis (MS) is a progressive neurodegenerative condition, in which the body’s immune system mistakenly attacks the myelin, the protective sheath surrounding nerve fibers. This disrupts the electric signals traveling along the nerve fibers from the brain to the rest of the body and vice versa, leading to symptoms such as numbness and tingling, muscle spasms, walking difficulties, and pain.
MS symptoms usually appear when a person is between the ages of 20 and 50. However, the disease can also occur in young children and the elderly.
MS is more common in women than men, with recent studies suggesting that women are three times as likely as men to have MS. The disease is estimated to affect about 1 million people in the U.S. and about 2.5 million worldwide.
As is the case with most autoimmune diseases, the exact cause of MS is not known. Several types of immune cells, including B-cells and T-cells, are thought to participate in the autoimmune attack.
Multiple factors likely contribute to the development and progression of MS. It is probable that both genetic and environmental factors play a role, scientists say.
Did You Know?
People newly diagnosed with clinically isolated syndrome or MS frequently experience pain, fatigue, depression, and anxiety in the first year after diagnosis, a 2021 study has reported. Fatigue was reported by almost two-thirds of new patients, and half experienced pain. Mental health symptoms were only slightly less common, with 47.4% reporting depression, and 38.7% experiencing anxiety. An analysis showed that many individuals experienced multiple symptoms simultaneously.
“You have multiple sclerosis, and you are going to be OK. You are filled with fear based on preconceived notions. … But you persevere. You fight. You stay bold. You do whatever it takes.
You will be tested. You will be challenged. You will fall over and over, but you will get up more times than you will have fallen. You persevere. You learn to adapt to change and learn that change is your only constant. … You cherish the small things in life for they are the big things.
You choose happiness. You choose life.”
— Jenn Powell, columnist, “Silver Linings”
Early Signs of MS
A definitive list of the early signs of MS does not exist, because different people experience different symptoms at different times. A number of symptoms, however, are common to the disease and may be considered early signs of MS, although their appearance depends on what areas of the brain and/or spinal cord are affected.
The most common initial MS symptoms are excessive fatigue, difficulties with walking or frequent stumbling, numbness or tingling (a feeling of pins and needles), problems with concentration or not thinking as quickly as you normally would, and vision problems.
Some symptoms may worsen over time, so they may not be as apparent in the early stages of the disease. In addition, other diseases also may share some of these same symptoms, and only a medical professional, such as a neurologist specialized in nervous system disorders — using a number of tests — can correctly diagnose MS.
Did You Know?
Many people start experiencing symptoms of MS several years before being diagnosed, according to a 2021 study. While it has long been known that people with MS tend to seek medical attention more frequently in the years before diagnosis than those without the disease, there has been debate as to whether this is a result of MS itself, or a prodromal phase of the disease — which refers to a distinct period of unspecific and mild symptoms seen prior to the onset of actual MS.
“Multiple sclerosis and many other illnesses are deemed invisible illnesses. We call some diseases invisible because symptoms are imperceptible to the human eye. Many people endure daily struggles unbeknownst to the general public.
To my warriors and friends, I see you. Keep fighting. Keep sharing. Continue to push through the tears and the pain. … Remember that you are not invisible. More importantly, together we are indivisible.”
— Teresa Wright-Johnson, columnist, “Patiently Awakened”
How Is MS Diagnosed?
An early and accurate diagnosis is very important, as it can allow for earlier treatment, which, in turn, tends to yield better clinical outcomes. However, there is no single test to diagnose MS. Most people seek medical attention more frequently before being diagnosed with MS, which may be due to a distinct period of unspecific and mild symptoms seen prior to the onset of the actual disease.
Researchers are continuing to work to improve methods of early detection of MS. Several studies have examined new approaches, from different MRI signals that may indicate early disease, to new radiotracers used in PET imaging that might identify MS before symptoms are visible, to artificial intelligence models.
Did You Know?
Because no single test can directly identify MS, diagnosis can be difficult, and MS can be mistaken for other diseases and illnesses. One study found that almost 1 in 5 patients diagnosed with MS and referred to two specialized centers were found to not have the disease. Migraine was the most common correct diagnosis eventually given these people.
“I am thankful for a lot of things in my life, and my MS diagnosis is one of them. Before learning it was MS, I was on a very long roller coaster ride of unexplained symptoms. … Having a concrete diagnosis has helped lift some of the burden of this terrible disease. It has allowed me to put my strength into combating the disease instead of searching for the problem. That is why I choose to be thankful for my MS diagnosis.”
— Debi Wilson, columnist, “Faith of the Mustard Seed”
You’ve Been Diagnosed With MS; Now What?
If you’ve recently been diagnosed with MS, you probably have a lot of questions. You are likely experiencing a number of emotions, and you might feel confused about where to go from here.
With the help of some members of our MS community, we’ve compiled a list of 12 questions that may be helpful to ask your doctor after an MS diagnosis. While not exhaustive, these questions may help you gain clarity and a better understanding of what an MS diagnosis means for you and your future.
These questions include:
- Do you specialize in MS?
- What type of MS do I have?
- What do my MRI results mean?
- How does an MS diagnosis affect my quality of life?
- What should I do if I think I’m having an exacerbation or experiencing a new symptom?
- Will my MS continue to progress
- What are my treatment options, and which one is best for me?
- Does my insurance cover my MS treatments?
- What else can I do to manage my MS on a day-to-day basis?
- What specialists should I see to manage my disease and symptoms?
- What do I do if I don’t feel my medication is working, or I can’t follow the regimen?
- Are there any clinical trials that may be an option for me?
For an in-depth look at each of these questions, including insights from our community contributors, you can access the full comprehensive guide below.
Advice to the Newly Diagnosed From Those Who Have Been There
Columnist Tamara Sellman offers some advice for newly diagnosed patients and a look at what she went through as she came to terms with her diagnosis. She writes:
If you’re newly diagnosed, the speed in which you cycle through the stages of denial, anger, bargaining, depression, and acceptance may be quick, or it may take some time. Just like MS itself, each grieving process will be specific to the person facing the loss.
Don’t seek out hard and firm rules or tricks for improving or shortening the process. Grieving — and then grieving again, if you alternate between periods of relapse and remission — remains a process that can’t be sculpted to be made more comfortable.
Explaining MS to a Loved One
The symptoms of MS are not always visible, and it may be difficult for people around you to understand what you’re going through on a day-to-day basis. Columnist Cathy Chester gives some advice on how to help people understand MS. She writes:
People are not mind readers. They need to be informed about your illness. This can make your journey with MS a lot smoother. Here are a few tips:
Explain to those you love what MS is, and what you’re experiencing. You’ll be surprised how much they want to learn about your illness to help you feel more at ease.
Remind others about symptoms that are not obvious or visible. Tell them that sometimes you need to cancel plans because your MS is active. Let them know you care about them, and you’ll reschedule when you’re feeling better. Reassure them that your health must be your priority. Thank them for their compassion and understanding.
Honesty is always the best policy. If you’d rather drive than walk to a store, explain why. If you need to leave a party early because of fatigue, tell the truth. Being honest will teach others about your disease, and is part of your overall wellness plan.
Reaching out for help is the key to staying well. Those who care feel helpless and don’t know what to do. Ask them for rides to appointments, help with shopping or laundry, with running errands. Anything that will lighten your load will help you, and those you love will feel useful.
If you are a parent, explain what MS is to your children in terms they can understand. Children are resilient and would rather know what’s happening than be left feeling anxious or frightened. When my son was born we made a pact to remain truthful about my disease. Now 24, he is my biggest advocate and understands the ups and downs of my illness. Being honest with your children is the right thing to do, and will lead to a happier family life.
Supporting a Loved One Through an MS Diagnosis
Receiving an MS diagnosis can be a scary and uncertain time — and not just for the person who has been diagnosed. Friends and family may struggle with what this news means and how they should act. Columnist Jessie Ace provides some guidance for supporting somebody who has just been diagnosed with MS. She writes:
Most often, patients are the focus of a diagnosis, and the people around them are almost forgotten. The thing is, a diagnosis often affects the people around a patient more than one might think. And the person being diagnosed will look to members of their family for support.
My advice for supporting a loved one going through a diagnosis includes:
Try not to Google symptoms or tell them what symptoms they should be feeling.
You can only deal with what is in front of you right now. Whatever happens in the future will happen, whether you worry about it or not. Focus on today instead. Everything is one step at a time.
Make their surroundings as normal as possible for them. Encourage (but don’t force) your loved one to eat, dress, and if they can, take a slow walk together to get some fresh air.
If they are feeling stressed, try playing meditation music on YouTube.
Be aware that your loved one will feel things they can’t explain.
Your job is not to solve problems, and sometimes just holding them and telling them everything will be OK is enough.
Understand that your loved one may be feeling confused and scared, so tell them as much as possible that you always will be there for them and that you love them.
Encourage them to keep a diary so they can move their thoughts and worries out of their head and give them somewhere else to live.
Did You Know?
MS patients are known to show greater evidence of mood disorders than those with other neurologic conditions, but a survey of MS patients in the U.K. found a clear link between the strength of family bonds and mood. Based on the results, the researchers believe that family involvement in the early stages of an MS diagnosis could reduce the prevalence of mood disorders in MS patients.
“MS is thrust upon us, and a new journey begins. Luckily, we have a few superpowers to help us live our best life: maintaining a positive attitude, adapting to a new normal, and finding the courage to move on. Our superpowers help us learn to accept our chronic disease, which is not a sign of resignation. Acceptance is the ability to make peace with where you are right now. I know this isn’t easy to do, but it’s certainly worth it.”
— Cathy Chester, columnist, “Making a Difference”