Michael R. Yochelson, MD, MBA
on August 6, 2023
While multiple sclerosis (MS) is not a particularly common disease, it’s not rare, either. According to the National Multiple Sclerosis Society (NMS), close to one million people are currently living with MS in the United States. The worldwide estimate of those living with MS is 2.9 million, according to the Multiple Sclerosis International Federation, and the global rate of increase means that one person is diagnosed with MS somewhere in the world every five minutes.
One encouraging development in MS care is that the time it takes to get a diagnosis is shrinking, though it can still be challenging, says Scott Ireland Otallah, MD, a professor of neurology at the Wake Forest University School of Medicine in Winston-Salem, North Carolina.
“Part of that is because many of the symptoms of MS are found in other medical conditions, some of which are much more common,” Dr. Otallah says.
So while no one symptom should trigger an immediate concern that you have MS, it’s good to know the signs and symptoms so that if you have them — and especially if they persist — you can get them checked out by a doctor.
What Can People With MS Teach Us?
The host and attendees of the 2022 Race to Erase MS gala say what they’ve learned from people with MS or what they can teach, as a person who has MS.
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Could It Be MS?
While some symptoms of MS are very common, there’s no typical pattern of symptoms that applies to everyone.
“Any part of the central nervous system [the brain, spinal cord, and optic nerve] can have a demyelinating lesion, and so you can have almost any symptom that could potentially be perceived as neurologic; that’s part of what can make diagnosis tricky,” says Otallah.
For one person, the first symptom of MS may be numbness and tingling, while for another it’s dizziness, and for yet another it’s crushing fatigue.
The key to determining whether a symptom might be due to MS is how it develops, says Tanuja Chitnis, MD, a professor of neurology at Harvard Medical School and the director of the Mass General Brigham Pediatric MS Center at Mass General Hospital for Children, both in Boston.
MS symptoms develop slowly over the course of several hours or days, Dr. Chitnis says, and can last for several days to a few weeks.
Symptoms that come and go within minutes or persist for only a short time — but not for hours — are much less likely to be caused by MS.
MS symptoms may also worsen in hot temperatures or when a person heats up from exercise or a hot bath, for example. The tendency for MS symptoms to worsen with heat is called Uhthoff phenomenon, notes StatPearls.
MS attacks, or flares, are also likely to cause lasting neurological deficits, or abnormalities in the function of a body part or area, even after the worst of the symptoms have subsided.
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Common Early Symptoms of Multiple Sclerosis
The following are some common early symptoms of MS.
Vision Loss Eye pain and loss of vision in one or, rarely, both eyes can be among the first signs of MS, says Otallah. These symptoms are typical of optic neuritis, which is caused by an inflammation of the optic nerve. Other symptoms of optic neuritis include blurred vision and diminished color vision.
In most cases of optic neuritis, vision returns on its own or with steroid treatment.
Dysesthesia (MS Hug) The “MS hug” is a strange squeezing sensation that can feel like a blood pressure cuff around the entire torso. This symptom usually means that MS has caused damage in the cervical spine (neck), per the NMS.
Weakness or Numbness Weakness or numbness in one part of the body can be an early sign of MS. The feeling can be in the trunk, arms, legs, hands, or one side of the face, according to the Merck Manual.
This isn’t the temporary, pins-and-needles numbness that accompanies resting on an arm or leg in the wrong way, which lasts for seconds or minutes and goes away within a few minutes as blood flow returns to the area. Numbness or tingling associated with MS tends to develop over days or weeks and takes days or weeks to resolve, says Otallah.
Balance and Walking Difficulties Balance problems and dizziness are common early signs of MS, says Otallah. Trouble walking can be among the first indications of MS, according to Johns Hopkins Medicine.
MS Prodrome: Are There Symptoms That Anticipate MS Symptoms?
A prodrome is a premonitory or warning phase of a medical problem yet to come. It’s an early stage of signs or symptoms that happens before the onset of the typical symptoms.
“Prodrome for MS has been discussed and studied more in recent years; 10 or 15 years ago, we didn’t necessarily think of MS as having a prodrome,” says Otallah.
There is now more evidence to suggest that there may be some symptoms that occur in people well before their first demyelinating event or MS diagnosis, he says.
Cognitive impairment is one potential symptom of prodrome that has been identified, says Otallah, referring to a study in the Annals of Neurology. Researchers followed 20,000 Norwegian men who were about to enter military service, 900 of whom went on to develop MS. Investigators found that cognitive performance in those men was reduced up to two years before they had any clinical signs of MS.
A few studies have suggested that in the 5 to 10 years or so leading up to an MS diagnosis people use more health services for a variety of reasons compared with others who don’t go on to be diagnosed, as a review of research noted.
One study found a 75 percent increase in the rate of hospitalization, an 88 percent higher rate of healthcare usage, and a 49 percent increase in medication prescriptions in the five years before the first demyelinating event in people with MS compared with control groups. This included a 50 percent increase in mental health visits as well as increased rates of headache, migraine, fibromyalgia, pain, sleep disturbances, irritable bowel syndrome, and urology and dermatology referrals.
“There does seem to be an increase in depression, anxiety, and migraine prior to MS diagnosis, but all three of those conditions are also very common in the general population, and most of those people never go on to develop MS,” says Otallah.
These conditions, along with other suspected prodrome symptoms, aren’t being used to identify people who may be at an increased risk of MS yet, he says. “We’re not at a point where we can use these to predict if someone is going to go on to develop MS, but when we look back, we are noticing correlations.”