Updated on September 9, 2024.
Multiple sclerosis (MS) is a difficult condition to detect for many reasons. It develops differently with each individual, and the symptoms of MS overlap with symptoms for many other conditions. Fatigue and muscle stiffness or weakness may be attributed by healthcare providers (HCPs) to an unhealthy diet, being overweight, or stress.
Even if an HCP suspects that a person’s symptoms stem from a more serious condition, many other conditions could also be the reason behind the symptoms. This makes narrowing it down to MS a lengthy task. Here’s what you need to know about MS and why some people may wait a long time to get an accurate diagnosis.
What is MS?
Multiple sclerosis is an autoimmune disease of the nervous system. The cause of MS is still unknown. For reasons not completely understood, the body’s own immune cells begin to attack myelin, a fatty substance that insulates the nerves of the brain and spinal cord. Nerve cells themselves also may be damaged by these attacks.
The result can be a host of different neurological issues. Essentially, the communication between the brain and other areas of the body becomes disrupted or interrupted, which triggers a wide range of symptoms, including:
- Tingling and numbness
- Dizziness or vertigo
- Memory issues
- Mood shifts
- Pain
- Vision problems like double vision or loss of vision
- Fatigue
- Difficulty walking
- Weakness of the limbs and possibly paralysis
Each symptom might last a long time or be temporary, but MS itself is a chronic and often relapsing condition.
About 1 million people in the United States are living with MS, according to a 2019 study supported by the National MS Society and published in three parts in the journal Neurology. Only about a quarter of people with MS were assigned male at birth. Most people with MS who receive a diagnosis are white people of European descent and between ages 20 and 50, though people of all ethnicities and ages can develop it.
Many different symptoms
Not only is MS characterized by a wide variety of symptoms, but it also shows up differently from person to person, making accurate and early diagnosis difficult. In fact, no two people with MS present identical symptoms, and each person’s symptoms might change over time.
Furthermore, there is no single test that positively establishes MS in all cases, and MS symptoms are often similar or even identical to symptoms of other health conditions. Missed diagnoses, where the condition is present but not diagnosed, are common.
When a person visits an HCP about symptoms, other serious conditions often need to be ruled out first. These include diseases like Lyme disease, syphilis, human immunodeficiency virus (HIV), and lupus, plus a wide range of lesser-known central nervous system infections, other autoimmune diseases, genetic conditions, nutritional deficiencies, structural issues, and cancers.
In part because there are so many possible reasons for MS symptoms, diagnosis can be time-consuming and complicated.
Navigating to an accurate diagnosis
Although any HCP can diagnose MS, neurologists may be most knowledgeable about it. They are health professionals who specialize in the diagnosis and treatment of nerve-related diseases such as MS. To diagnose the condition, an HCP will evaluate you and go through a series of investigative steps.
Your health background and issues: Your HCP will look at your medical history and note your symptoms. For some people, identifying MS can be tricky, especially in its early stages, because sometimes there are no symptoms. However, if you suspect you may have MS and you do have symptoms, it’s important to begin tracking these as soon as you start to experience them. It can help you provide accurate information to an HCP.
Risk factors: Your HCP will also note whether you have any factors that raise your risk of MS. These include sex (those assigned female at birth are more likely to develop MS), smoking, and obesity, as well as low vitamin D levels and past infection with Epstein-Barr Virus (EBV), also known as mono.
Physical exam: Next, your HCP will do a careful examination and may perform a variety of tests. These include testing for different health conditions that share symptoms with MS, and tests to detect evidence of MS itself.
MS-focused tests will look at your neurological system and examine things like:
- Vision
- Hearing
- Sensation in your arms and legs
- Reflexes
- Balance
- Coordination
One of the most important tests is a magnetic resonance imaging test (MRI), which has the capability of showing places in your body with the kind of damage that MS typically causes.
Another reason why some people experience lengthy waits for an MS diagnosis is that tests often need to be done more than once to see if there are changes over time.
Criteria: In addition to needing to rule out other possible causes of MS-like symptoms, there are specific criteria that need to be met. Diagnosis of MS can only be made once the HCP can identify two episodes of MS-like activity, which need to occur in different parts of the central nervous system like the brain or spinal cord and take place at separate times. This might contribute to a delay in diagnosis.
Clinically isolated syndrome
In cases where only one symptom episode has taken place, a person may be given the diagnosis of clinically isolated syndrome (CIS). This means you’ve experienced at least one MS-like symptom that lasted at least 24 hours and was caused in part by demyelination somewhere in the central nervous system.
Though CIS isn’t an MS diagnosis and doesn’t guarantee you’ll develop MS, it may mean you are at higher risk of developing MS. In this case, medications are available that may help delay the development of MS. About 63 percent of those with CIS will go on to have MS.
Misdiagnosed MS
Because it’s so difficult to detect with certainty, misdiagnosis of MS—when the condition is diagnosed but is not in fact present—is also common. The exact number of misdiagnoses isn’t known, but some studies have shown that between 30 and 50 percent of people initially referred to MS treatment centers did not ultimately turn out to have MS, but a different condition.
Reasons for optimism
Since permanent neurological damage can begin even at the very beginning of the MS disease process, early detection is best to help prevent damage to nerve cells. Although there are many reasons why getting a timely diagnosis may take longer than desired, there’s also reason for optimism.
The advent of magnetic resonance imaging (MR, which takes pictures of the inside of the body) made it possible for researchers to get a better grasp of how the disease progresses. And much continues to be accomplished in the field of MS research, especially around treatments that can relieve symptoms and minimize disability. Research is actively ongoing in the U.S. around dozens of aspects of the disease’s cause, progression, symptoms, treatment, and potential therapies to stop or reverse the disease course.
With accurate and early diagnosis and appropriate treatment, an active life is well within the realm of possibility for many people with MS. If you think you may have MS, consult with your HCP to help you uncover the causes of your symptoms.
