Nearly 1 million people in the U.S. have been diagnosed with multiple sclerosis, but research suggests that up to 1 in 5 people have been misdiagnosed.
MS is an autoimmune disease that disrupts the communication between the brain and the central nervous system, causing the immune system to mistakenly attack the myelin, the protective layer that covers the nerve cells in your brain, optic nerves and spinal cord. This damage makes it difficult for your brain to communicate with the rest of your body, and these misfiring signals can manifest in a number of different symptoms.
Dr. Omar Al-Louzi, a neurologist and director of the Visual Outcomes Laboratory at Cedars-Sinai Medical Center in Los Angeles, has dedicated his career to MS research, specifically to identify the causes of visual loss and other clinical disabilities related to the disease. Al-Louzi’s own mother had MS and — like many of those with MS — spent years going from doctor to doctor about her symptoms before she finally received the correct diagnosis. Although she passed away more than 15 years ago, her legacy lives on in Al-Louzi’s work.
“What I’m hoping to do is for patients to avoid this in the future,” he says. “If we have more accurate technologies then we have more accurate ways of making a diagnosis before the symptoms progress and before people develop disability from this disease. Really, that would be kind of a lifelong dream come true.”
[SEE: Health Screenings You Need Now.]
The Importance of an Early Diagnosis
As with many health conditions, early diagnosis of MS is key to getting treated as soon as possible before the disease progresses.
“We know based on a lot of trials and literature that the earlier that you start treatment, the better we are at preventing the risk of eventual disability,” Al-Louzi says.
Conversely, if you are misdiagnosed with MS, you delay treatment for the real disease causing your symptoms and unnecessarily experience a number of other side effects. Finding out the treatment you’ve been receiving to fight MS, which is typically pretty intense, has not been effectively treating the root of your problem can cause mental distress, as well.
“From a psychological perspective, that can be very difficult,” says Anthony Feinstein, a professor of psychiatry at the University of Toronto.
[SEE: How to Describe Medical Symptoms to Your Doctor.]
Symptoms of MS
MS symptoms may present differently in each person based on where the damage is located on the spinal cord.
“Sometimes, symptoms can be vague, so you’ll often find patients have been symptomatic for quite a long time before they get the diagnosis,” Feinstein says.
The most common symptoms of MS can include:
— Numbness or tingling, commonly felt in the torso, face, arms and legs.
— Extreme fatigue.
— Mood changes.
— Vision problems, which may present as blurred vision and pain with eye movement. Optic nerve inflammation is the first symptom in about 20% to 25% of MS patients.
— Muscle weakness or stiffness.
— Dizziness and vertigo.
— Bladder and bowel problems, such as constipation or loss of control.
— Depression.
— Cognitive changes, such as short-term memory loss, but it would be rare for this alone to be your first symptom.
Less common symptoms include:
— Difficulty swallowing.
— Uncontrollable shaking or tremors.
— Slurred speech, stuttering or other vocal problems.
— Unexplained itching or burning.
— Issues with breathing.
— Hearing loss.
[Read: The Best Foods for an MS Diet.]
Types of MS
There are four types of MS.
— Clinically isolated syndrome. CIS is not an official MS diagnosis. Instead, it is a possible diagnosis after the first attack that may be an early indicator of MS. People with CIS often experience a high probability of experiencing a second attack.
— Relapsing-remitting MS. People with this form of MS alternate between periods of new or increasing neurological symptoms (relapses) and the periods when these symptoms partially or fully subside (remission). Approximately 85% of people with MS begin with this diagnosis.
— Primary progressive MS. A more aggressive form of MS, PPMS progresses from the start with no acute relapses and remissions in symptoms. Between 10% to 15% of people with MS are diagnosed with this type.
— Secondary progressive MS. About 80% of people who are diagnosed with RRMS, will eventually develop secondary progressive MS, characterized by worsening levels of neurological function and disability.
How to Diagnose MS
Unlike a infection like COVID-19, there’s no singular test you can take to find out if you’re positive or negative for MS. If you think you have MS, your doctor will review your family medical history and rule out a number of conditions.
Then, your neurologist will likely order a spinal tap to search for antibodies associated with MS and an MRI to look for brain lesions caused by your immune system attacking the myelin sheath.
However, even these tests do not always guarantee a correct diagnosis.
“There are a lot of conditions that can cause abnormalities on the MRI … that sometimes look like MS lesions, but are not MS — and vice versa,” Al-Louzi says.
Conditions to Rule Out Before MS
Since getting an MS diagnosis is a process of elimination, the following conditions are usually ruled out first:
— Migraines.
— Cerebral small vessel disease.
— Neuromyelitis optica.
— Functional neurological disorder.
— Myasthenia gravis.
— Lupus.
— Vitamin B12 deficiency.
— Diabetes.
— Stroke.
— Other neurodegenerative diseases.
Migraines
A migraine is often viewed as a bad headache, but in reality, it’s much more serious than that. In addition to severe head pain, the neurological condition is often accompanied by nausea, sensitivity to light and sound, dizziness and — for some people — an aura, which is a visual disturbance that can occur before a migraine.
A person experiencing a migraine might feel numbness or weakness on one side of the body, which — in many cases — can look like MS.
“The patients would get imaging and MRI scans where they might also be at risk of seeing certain spots on their brain that can also be related to the migraine, not related to the MS,” Al-Louzi says.
A demographic overlap is also to blame. Migraines typically affect women, and four times as many women have MS than men.
Cerebral small vessel disease
Cerebral small vessel disease (CSVD), also known as microvascular ischemic disease and small vessel ischemic disease, refers to a number of problems that can occur in your brain’s small blood vessels. If left untreated it may cause dementia, stroke and cerebral hemorrhage.
Although it’s not fully understood, plaque build-up in the small vessels inside your brain is thought to cause CSVD.
You might not have heard of this disease, but it’s pretty common in older adults. A review published in Lancet Neurology found that up to 20% of seemingly healthy adults had brain damage due to CSVD.
Symptoms of CSVD that overlap with MS include:
— Numbness or weakness on one side of the body.
— Trouble with coordination or balance.
— Incontinence.
— Vision loss in one or both eyes.
— Headaches.
— Cognitive impairment.
CSVD is often more common in patients who are older or people who may have vascular comorbidities, such as high blood pressure, high cholesterol or diabetes.
Like MS, CSVD is diagnosed by MRI.
To tell the two conditions apart, doctors will look at the size of the brain lesions and where in brain they’re found, Al-Louzi says.
Neuromyelitis optica
The nerve that connects the eye to the brain is called the optic nerve. In neuromyelitis optica, the body attacks the optic nerve and the spinal cord. Like MS, this can lead to eye pain, blindness in one or both eyes, bladder or bowel control issues and weakness in arms and legs.
As is the case with many autoimmune disorders, what exactly causes NMO is not exactly clear, but it may occur in people with a family history of autoimmune diseases. Like MS, these symptoms may flare up suddenly and mostly affect women.
MRIs, spinal taps and blood tests are used to diagnose NMO.
“Prior to the availability of these labs, those were actually patients who were misdiagnosed as MS because there wasn’t an easy way for us to label them as such, or as having those conditions,” Al-Louzi says. “Other forms of autoimmune disorders can mimic MS, we can actually differentiate them using novel laboratory technology to detect these specific antibodies that attack the brain, the spinal cord or the optic nerves.”
Functional neurological disorder
When someone has functional neurological disorder (FND), they start to experience very real neurological symptoms that can’t be traced to any ailment of the nervous system.
“FND, or conversion disorder, in which they present with quasi-neurological symptoms that superficially resemble multiple sclerosis, but it’s not,” says Feinstein. “In other words, one of these disorders presents with physical symptoms (and) neurological symptoms, but the primary cause of psychiatric.”
Depending on the specific case, a person may experience difficulty walking or a loss of balance, numbness, vision or speech problems and difficulty with memory and concentration. While symptoms are not caused by any underlying condition or physical damage, those with FND cannot make the symptoms happen — or make them go away.
Feinstein says he sees about a half dozen cases of FND mistaken for MS a year, but with improved diagnostic imaging and clinical awareness, the rate of misdiagnosis is approximately 4%.
Experts aren’t sure what causes this rare condition. Some think it has something to do with emotional or physical trauma, while others say cellular or metabolic changes may be behind FND; however, most agree it’s likely a combination of the two.
Myasthenia gravis
Muscle weakness — particularly in the face, neck, throat and limbs — can be caused by myasthenia gravis. With this autoimmune condition, a problem arises with the communication between the nerves and the muscles.
Like MS, symptoms may include eye pain and weakness in the arms and legs. However, unlike MS, a person may also experience droopy eyelids, difficulty speaking and swallowing, slurred speech and trouble making facial expressions.
“In severe forms, you can get the respiratory muscles paralysis, individuals require intubation, but it’s treatable,” Feinstein says.
A blood test and a CT or MRI scan are used to give you the correct diagnosis.
Lupus
Lupus is a chronic autoimmune disease that affects up 1.5 million people in the U.S. The disease causes inflammation, which can result in pain throughout the body.
Fatigue, joint stiffness and pain, and headaches are all hallmark signs of lupus that overlap with those of MS. However, additional signs of lupus may include a butterfly-shaped rash, light sensitivity, seizures and fever.
Similar to MS, lupus mostly affects women. In fact, around 90% of adults with lupus are women. Another feature the two disease share is that there is no one diagnostic test for lupus, which can make finding out you have lupus difficult.
Lupus rarely affects the nervous system, so an MRI should help you rule this condition out.
Vitamin B12 deficiency
If you don’t get enough vitamin B12 in your diet, you may start to experience numbness and tingling in your extremities, trouble concentrating, fatigue and trouble walking — all of which can be confused for MS symptoms. This is because you need vitamin B12 to break down fatty acids, and those maintain the myelin sheath. A blood test can easily rule out a vitamin B12 deficiency.
Vitamin B12 is found naturally in animal products — like fish, shellfish, red meat, poultry, eggs and dairy products. Vegetarians and vegans can get vitamin B12 from nutritional yeast and fortified foods — like breakfast cereals — but should talk to a nutritionist about supplementation if they’re experiencing the symptoms above.
Diabetes
Having either Type 1 and Type 2 diabetes means that your body doesn’t make any or enough insulin, causing trouble controlling your blood sugar levels.
In addition to symptoms like increased thirst and urination, sudden weight loss, and slow-to-heal sores, some of the symptoms of diabetes can crossover with the symptoms of MS, like blurred vision and fatigue.
Some people may also develop a condition called diabetic neuropathy. Neuropathy is nerve damage that may cause the numbness, tingling or pain in your feet and legs that are often associated with MS.
Stroke
A stroke occurs when one of your brain’s blood vessels gets blocked or ruptured, depriving your brain of essential oxygen. Symptoms come on suddenly, much like an MS attack. Numbness or weakness on a single side of the body, a sudden and intense headache, dizziness and confusion are all signs of a stroke.
The American Stroke Association uses the acronym FAST to help spot strokes.
— Facial weakness: Can the person smile? Has their mouth or eye drooped?
— Arm weakness: Can the person raise both arms?
— Speech problems: Can the person speak clearly and understand what you say?
— Time to call 911: if you see any of these signs.
Acting fast can save someone’s life. Once in the emergency room, doctors can stabilize the person. If a stroke is later ruled out, then doctors can start preliminary testing to figure out what caused the event.
Other neurodegenerative disorders
Parkinson’s disease and amyotrophic lateral sclerosis, commonly referred to as ALS, are two other serious conditions that can be mistaken for MS. Like MS, ALS also affects your brain and spinal cord. The two conditions can be similarly difficult to diagnose since symptoms vary so much from person to person. Weakness and twitching in the hand and leg muscles, fatigue, trouble breathing and — for some people — cognitive decline may indicate that you have ALS.
Oftentimes, MS is actually ruled out before you get to an ALS diagnosis. ALS also does not have one specific diagnostic test, but electromyography imaging tests of the brain and spinal cord, an MRI and blood and urine tests are used to get to an ALS diagnosis.
Parkinson’s disease is known most for the uncontrollable shaking and tremors caused by this brain disease. But in early stages, symptoms — like trouble walking, difficulty with balance, fatigue and confusion — may be confused with MS. Parkinson’s is diagnosed by physical exam, medical imaging and blood and urine tests. In addition, because Parkinson’s is associated with lower levels of dopamine in the brain, a dopamine transporter scan is also used to diagnose the condition.
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Diseases Similar to MS (Multiple Sclerosis) originally appeared on usnews.com
Update 03/20/23: This story was previously published at an earlier date and has been updated with new information.
