Getting diagnosed with multiple sclerosis can be a confusing and even frightening experience. You may think that your life is over, but HealthCentral is here to tell you it’s most definitely not. Armed with the right knowledge, you can go on to live a long, full, and purposeful life. Medication and lifestyle treatments do wonders for quality of life these days. But it all starts with diagnosis. Here’s what you need to know.
We went to some of the nation's top MS experts to bring you the most scientific and up-to-date information possible.
Meghan Beier, Ph.D.Assistant Professor of Physical Medicine and Rehabilitation and Clinical Neuropsychologist
Bruce Cohen, M.D.Chief of MS/Neuroimmunology, Department of Neurology
Neeta Garg, M.D.Associate Professor of Clinical Neurology
Remind Me: What Is MS, Again?
Let’s get one thing straight: The prognosis for those diagnosed with MS in the 21st century is excellent. Your doctors know more about the disease than ever before, and you have an array of safe and incredibly effective treatments at your disposal.
MS is an autoimmune disease. That means your immune system mistakenly attacks healthy tissues—in this case the myelin sheath. That’s the protective coating that wraps around individual nerve cells in your central nervous system (CNS), which is comprised of your brain, optic nerves, and spine.
Nerves are like electrical wires. Their job is to transmit electrical impulses to and from the CNS, communicating messages that enable you to move, react, and think. They’re lined up end-to-end so that the long, cable-like axon of one nerve passes an impulse, or message, to the next—and so on.
Myelin is a fatty substance that acts as insulation, ensuring an impulse travels smoothly from one nerve to another. When immune cells destroy myelin, part of the electrical impulse leaks off the nerve and doesn’t get transmitted efficiently or, in some cases, at all. The result? Symptoms that can range from mild to impossible-to-ignore—which in turn will lead to a diagnosis of multiple sclerosis.
There are four main types of multiple sclerosis, plus a possible precursor that may signal an MS diagnosis is on the horizon. They are:
Clinically Isolated Syndrome (CIS): This is an attack of an MS-like symptom such as spasticity (involuntary contraction of muscles), optic neuritis (eye pain with vision disturbances) or other common MS challenges, which may or may not turn into MS. In order for the diagnosis to be labeled CIS, it has to last 24 hours and be caused by a loss of myelin as depicted on a brain scan. For some people, a single episode of CIS is their only time experiencing an MS-like symptom. For others, the symptoms return, and they go on to be diagnosed with MS.
Relapsing-Remitting MS (RRMS): This is by the far the most common type, affecting approximately 85% of people with MS. RRMS is characterized by attacks of common MS symptoms, from cognitive issues to eye pain and balance problems, and more. These attacks are called relapses, flares, or exacerbations, which may last days, weeks or months, and then go away for a period of time (remissions). Symptoms eventually return causing about the same level of disability as the previous flare.
Secondary-Progressive MS (SPMS): Until the advent of disease-modifying therapies (DMTs) that slow the progression of MS, most people with RRMS would eventually develop SPMS, a more advanced stage in which the disability caused by MS symptoms worsens, with or without periods of remission. Now, thanks to these newer treatments, fewer people develop SPMS, and those who do generally develop it many years or even decades after initial diagnosis.
Primary-Progressive MS (PPMS): Much less common than RRMS, PPMS affects 10% of people with MS. People with PPMS never experience the cycle of relapses and remissions; the disease progresses from the outset and symptoms never really go away.
Progressive-Relapsing MS (PRMS): Affecting just 5% of people with MS, PRMS is the rarest form of the disease, known for its steadily worsening symptoms and acute (severe) relapses, with or without recovery.
How Can I Recognize MS Symptoms Before Diagnosis?
Diagnosing MS can be a challenge, and unfortunately, there is no one MS test. Little about MS is simple, and diagnosis it is no exception.
Your doctor will likely need to rule out many other possible disorders, from lupus to clinical depression, before you receive an MS diagnosis. This process is called a diagnosis of exclusion, or differential diagnosis. That’s because since MS can present in so many different ways, symptoms alone usually aren’t enough for a firm diagnosis. Stroke, for example, can look a lot like MS, especially in older people, both in terms of the symptoms they cause and the way a stroke appears on a magnetic resonance imaging (MRI) scan.
Trouble controlling your bladder or bowel movements
Recognizing these symptoms and mentioning them to your doctor if you’ve ever experienced them—even randomly, years before—may help your physician puzzle together an MS diagnosis now.
What Are the Preliminary MS Tests My Doctor Might Give Me?
Since there is no single test for MS, diagnosing it requires a multi-pronged, methodical approach that could involve two or more specialists. While MS leaves behind pretty clear evidence of brain lesions on imaging scans, when you first seek answers (early on, before anyone can put a name to what you’re experiencing), your doctors may first conduct a series of exams.
Here are the range of tools your doctors may use to diagnose MS:
General Physical Exam
You might seek treatment because you’re experiencing symptoms, or a clinician might notice something a little “off” during a totally unrelated visit. Either way, you'll be given a physical exam with a number of low-tech tests. Your doctor may ask you to walk some distance and note any abnormalities with your gait, for instance, or have you stand on one foot to check your balance. He or she may ask questions designed to test your memory. The little rubber mallet might appear for a reflex test. Even just squeezing an arm or a leg can reveal muscle spasticity, which could start you on the path toward an MS diagnosis.
A neurological exam will focus on your central and peripheral nervous systems. Neurological exams and physical exams overlap a great deal; both will involve muscle spasticity and reflex function, for example, and both will probably test coordination.
The effects of MS damage to the 12 pairs of cranial nerves—the nerves that originate directly from the brain instead of the spinal cord—may show themselves during a neurological exam. These nerves control:
Sense of smell
Sense of taste
Swallowing and gag reflex
Any problems with any of the above might put MS on a specialist’s radar.
Optic neuritis—inflammation and demyelination of the optic nerve—occurs in up to half of all cases of MS, and it’s the first symptom in 15% to 20% of diagnoses. If you have eye pain, blurry vision, loss of color vision or you see flashes of light, you will likely be given an ophthalmologic exam—an eye test.
Your primary care provider or an ophthalmologist might notice changes in the eye itself as well as changes to your vision. While optic neuritis can occasionally occur without MS being the cause, a diagnosis of this condition, which generally causes symptoms that retreat and are not permanent, will likely raise a red flag to your healthcare provider that multiple sclerosis is a possible diagnosis.
Physical exams can tell your treatment team what your symptoms are and what could be causing them. Certain blood tests give clues as to what’s probably not the problem. In the MS diagnosis process, blood tests are mostly used to rule out other diseases that have similar symptoms of MS. Some of these can include:
HIV, which can cause inflammation in the CNS
Vitamin B12 deficiency
Over- or underactive thyroid
Developing a blood test to detect MS is an area of interest to many researchers. In one 2016 study, researchers took blood samples from people with MS and from control groups and added C-reactive protein, a substance produced by the body in response to inflammation. According to the research, more of the protein bound to more of the red blood cells from people with MS than from the control groups, which opens up future avenues of research for an MS blood test.
Another lab has been working on a test to help estimate if someone who has had an episode of clinically isolated syndrome (CIS) will go on to develop multiple sclerosis.
Currently, blood tests that detect MS remain unavailable, despite promising research. This is one area to watch for sure.
Evoked Potential Study
An evoked potential test can measure the flow of electricity through nerves. Here's how it works: You’ll have electrodes attached to your scalp and, depending on the type of test, other areas of your body. Then you’ll receive some kind of stimulus—see below—and the evoked response test will measure how long it takes for the signal to travel from the sensory organ to the brain or from the brain to the muscles.
There are three types evoked potential studies, each looking at different types of nerves:
Visual evoked response test, using flashing lights or other images to assess the optic nerves
Brainstem auditory evoked response test, using clicking noises in one ear to check your auditory nerves
Somatosensory evoked response test, using mild electrical stimulation to evaluate the function of the spinal cord and nerves that enervate muscles in your arms and legs
If your doctor spots a problem with how your nerves are responding, you may be that much closer to receiving a diagnosis of MS.
What Are the Most Definitive Tests for MS?
Some tests, such as physical exams, can spot nonspecific symptoms. Blood work can systematically rule out other possible causes. But MS almost always leaves behind evidence in the form of scarring on the nerves and inflammation waste products in the cerebrospinal fluid (CSF). MRI scans and spinal taps can bring this evidence to light and help doctors make a definitive diagnosis of MS.
Magnetic Resonance Imaging (MRI) Test
Widespread use of magnetic resonance imaging (MRI) has revolutionized the diagnosis and treatment of MS. Lesions—the scarring of brain tissue caused by MS—can often be easily seen on an MRI. Such scans use powerful electromagnetic fields and radio waves to create a picture of the brain and other internal structures. MRIs can show all manner of soft tissue, from a meniscus tear in the knee to tumors on the liver to, yes, MS lesions on the brain, which look like bright white spots on the black-and-white MRI scan.
Lesion evidence on an MRI is one of the main diagnostic criteria for MS. However, MRIs are not perfect, and it’s possible to miss lesions, because they may be small or obscured by other brain structures in a particular scan. That’s why other tests are usually necessary to confirm a diagnosis of MS.
Nearly as powerful as the MRI in diagnosing MS is the spinal tap. Also known as a lumbar puncture, the spinal tap uses a needle to draw cerebrospinal fluid out of the spinal canal at the lower back. Cerebrospinal fluid (CSF) flows in the hollow spaces around the brain and spine. Its purpose is to protect and cushion the CNS, provide nutrients, and remove waste products.
This is important when it comes to diagnosing MS. Inflammation is one of the results of immune system activity, and when there’s inflammation in the CNS, certain proteins get released into the CSF.
These proteins, known as immunoglobins, show up in a spinal tap as structures called oligoclonal bands. CSF is clear, so healthcare providers add various stains and dyes to get compounds such as oligoclonal bands to show up. If there are two or more bands in the cerebrospinal fluid sample, it suggests that there’s been inflammation in the CNS. Doctors will combine the spinal tap results with other clues that may point to MS (such as symptoms and MRI results) to confirm or rule out MS.
Thanks to local anesthetic, a spinal tap may be uncomfortable but is rarely painful. Any woman who has had an epidural during childbirth can expect a similar sensation. You might feel an odd sensation of pressure as the needle pierces the protective spinal membrane to access the CSF.
Like an MRI, a spinal tap that reveals oligoclonal bands is not a slam dunk MS diagnosis. Other conditions—Lyme disease, multiple myeloma, Guillain-Barre syndrome and a number of others—can also produce oligoclonal bands in a spinal tap. Even if oligoclonal bands show up, more tests are needed to confirm MS. But, if an MRI shows lesions and a spinal tap shows bands, MS is suspect number one.
Who Are the Members of My Diagnostic Team?
A disease as complicated as MS can’t be diagnosed in a vacuum, and it usually requires a healthcare team. Here are some of the specialists who will probably take part in an MS diagnosis:
Primary Care Provider
Your PCP is probably the doctor who knows you best, the one with whom you have the closest relationship. He or she is also the healthcare provider you’re most likely to call when you notice symptoms, or they begin to interfere with your day-to-day. Your doctor may refer you to a neurologist, or another specialist to rule out other conditions. And remember: Your PCP may not be the provider who makes the official MS call but serve as a crucial first step in your journey toward diagnosis.
This eye specialist may be the first to diagnose optic neuritis, a condition that causes temporary eye pain and vision loss, and is often the first indication that MS may be present.
More often than not, neurologists act as the captain of an MS treatment team, bringing in other specialists to treat and manage different aspects of the disease. They’re also probably the best-equipped specialist to make an MS diagnosis; they have ample experience working with neurologic diseases, and they're in the best position to recognize if your symptoms are caused by MS or another neurologic condition.
The radiologist oversees and interprets the results of imaging scans such as magnetic resonance imaging (MRIs). MRIs have been a huge boon to MS diagnosis in recent years as they’ve gotten more powerful and sensitive, so radiologists are an important part of getting an MS diagnosis.
I’ve Been Diagnosed With MS. Now, What?
Some people find that it helps to take action after they’ve been diagnosed with MS. Now that you’ve got a name for your symptoms, you can start doing your research into treatments and how best to live with MS. You can seek support groups and look into healthier lifestyle options, including diet, exercise, and mediation. In addition, you’ll discover there are more effective MS therapies now than ever before, and while there are still many unanswered questions, more are being answered every year.
So, there’s a lot to be encouraged about. You’ll have a team of experts working together to help you thrive with MS. Quality of life for people with multiple sclerosis has never been higher. It will take work, and sometimes it won’t be easy, but you can live—and live well—with MS.
Frequently Asked QuestionsMS Diagnosis
Is there one test to detect MS?
No, there is no one test to detect multiple sclerosis. Instead, doctors use a variety of methods, including MRIs, spinal taps, and blood tests, and first must rule out other diseases before arriving at an MS diagnosis.
What are some early signs of MS?
Early warning symptoms of MS include vision problems (especially temporary blurriness or blindness in one eye), walking difficulty due to weakness in the legs, dizziness, and fatigue.
What is the average age of MS diagnosis?
Most people are diagnosed between the ages of 20 and 50. Keep in mind that MS may have been present and developing for months or even years before you get an official diagnosis.
What is an MS lesion?
A lesion is the evidence left behind by the inflammation and autoimmune attacks on the central nervous system (CNS) that characterize MS. Lesions can be seen on MRIs, and they often lead to an MS diagnosis.
SPMS Diagnosis Criteria:International Journal of MS Care. (2016). “The Transition to Secondary Progressive Multiple Sclerosis: An Exploratory Qualitative Study of Health Professionals' Experiences.” ijmsc.org/doi/10.7224/1537-2073.2015-062
tingling in hands Credit: iStock Distinguishing between the symptoms of multiple sclerosis (MS) and those of other conditions can be difficult at times. One year after I was diagnosed with MS, I began to experience problems with both of my hands. The...