Maybe your fingers have been tingling for a few days. Or you suddenly can’t see out of your left eye. Perhaps you’re super tired and can’t figure out why. The last thing you might think these feelings could be are early signs of multiple sclerosis (MS). But it’s not out of the realm of possibility, especially if you’re a woman under the age of 50. “We think there are over a million people in the United States that currently carry a diagnosis of MS and it’s three times more common in women,” says Barbara S. Giesser, M.D., FAAN, FANA, a staff physician at the Pacific Neuroscience Institute and professor of clinical neurology (emeritus) at the David Geffen UCLA School of Medicine.
MS can affect your entire body from your brain to your toes, and symptoms can vary from one person to the next, depending on what part of your central nervous system is damaged by the condition. It’s always smart to pay attention to your body and let your doctor know if anything feels off, but especially if you experience any of the neurologic symptoms detailed below, which can be signs of MS.
What is multiple sclerosis (MS)?
“MS is an autoimmune disease where the immune system attacks the coating of the nerves,” says Mitzi Joi Williams, M.D., a board-certified neurologist and medical director of the Joi Life Wellness MS Center in Atlanta. “It’s a substance called myelin and when that myelin or coating of the nerves is damaged, it can result in different symptoms. The symptoms depend on where the attack or damage occurs, and the damage with MS occurs in the brain, the spinal cord and in the nerves to the eye called the optic nerves.”
Unfortunately, no one knows exactly what causes this immune system betrayal. “What we’ve what we’ve thought for a while is, is that in order for somebody to develop MS, you have a combination of genetics and environment,” says Dr. Giesser. Potential environmental factors include the Epstein Barr virus and low sunlight exposure (which may result in low vitamin D levels).
Symptoms of MS:
“MS can produce many, many symptoms because as the disease suggests, it strikes multiple parts of the nervous system,” says Dr. Giesser. “The most common form of MS — the kind that roughly 75 to 85% of people present with — is what we call relapsing-remitting.” An official “relapse,” attack or exacerbation is the occurrence of a new symptom or a reappearance of a previous symptom that lasts for more than 24 hours and is not due to a known cause such as a fever, infection or being overheated. “Most relapses last days to weeks,” says Dr. Giesser. “When the symptoms subside, this is called a remission.”
Here are the most common early signs to look out for:
- Fatigue: “The most common symptom of MS is actually fatigue,” says Dr. Giesser. “Obviously MS is not the only thing that causes fatigue, but fatigue is a very common symptom.” MS is primarily a disease of young women and Dr. Giesser says it’s not uncommon for a young woman to complain of being incredibly tired and their doctor shrugs it off blaming the woman’s many responsibilities (such as work and/or kids). It’s a good reminder to pay attention to your body and advocate for yourself if you’re not being taken seriously.
- Numbness or tingling: “Numbness and tingling — especially that comes and goes in the hands or feet — is a common symptom,” says Dr. Giesser. “Again, clearly MS is not the only thing that causes that.”
- Vision problems: “Some of the most common starting symptoms or presenting symptoms that people have with MS are visual problems,” says Dr. Williams. “They may lose vision in one eye or the other eye. Sometimes they’ll have a change in color vision.” Pain when you move your eyes is another red flag.
- Weakness: “People may have symptoms of numbness on one side of the body or weakness on one side of the body or weakness in their legs,” says Dr. Williams. In cases like that, sometimes MS is mistaken for a stroke, but stroke symptoms don’t come and go the way MS symptoms do.
- Muscle spasms and stiffness: Formally called spasticity, this symptom can range from mild feelings of muscle tightness to severe and painful spasms, according to the National MS Society, and it most commonly affects the legs.
- Balance problems: MS can directly impact a person’s equilibrium and the ability to balance. On top of that, the weakness, vision loss and sensory issues triggered by MS can also throw you off kilter.
- Torso tightness: “Some people with MS may experience a sensation as though they have a tight band or belt around their torso,” says Dr. Giesser. “This is due to nerve damage in the thoracic spinal cord and is called the ‘MS hug.’”
- Pain: “We used to think the MS was not painful and that if people had pain, it wasn’t MS,” says Dr. Williams. “But now it is very well-recognized that pain is a common symptom of MS.” That said, pain can manifest in different ways. You could have painful muscle spasms, nerve pain or even numbness and tingling that hurts.
- Change in bladder habits: “The most common bladder symptoms that people have are what we call frequency where they have to go to the restroom a lot or urinate frequently,” says Dr. Williams. “Or they may have hesitancy where they feel like they have to go but they don’t fully empty their bladder and they have to go again.”
- Sexual problems: “MS may affect sexual function in a number of ways,” says Dr. Giesser. Women may experience anorgasmia (delayed, infrequent or absent orgasms) or dyspareunia (pain with intercourse) while men may have erectile dysfunction. “Both sexes may have decreased libido, not only due to the MS, but also secondary to other symptoms such as fatigue or medication effects,” adds Dr. Giesser.
- Constipation: Yes, MS can interfere with bowel movements. “Although it can occur, it usually is in combination with something else like weakness in an extremity,” says Dr. Williams.
- Depression: “There are studies that suggest that over 50% of people with MS deal with depression at some point during the course of their illness and anxiety is also very common,” says Dr. Williams. “Some of that could be related to damage to the brain. The other piece is that it is a very life-changing diagnosis. There are a lot of unknowns in terms of how someone will do over time and so oftentimes there’s a lot of anxiety associated with the unknown and a lot of depression when people have lost function and maybe can’t do the things they used to do.” If you’re not feeling well mentally, mention it to your doctor so they can address it as part of your treatment plan.
- Cognitive changes: The most common cognitive changes related to MS tend to be things like slowed processing (when you need to read things a few times to let them sink in), difficulty finding words, loss of short-term memory and multitasking problems, according to Dr. Williams. However, other things such as fatigue, stress or even medications can interfere with cognition, “so it’s very important for people to work with their doctors to try to make sure we’re balancing their other symptoms and treating their cognitive dysfunction appropriately,” she adds.
- Tremor: “The most common form of tremor due to MS is what is called an action tremor,” says Dr. Giesser. “The limb or hand shakes when the person tries to do something with it. Rehabilitative techniques and sometimes medications can help with this.” When MS causes increased muscle tone or spasticity, that can also lead to shaking which medication and physical therapy can help with.
- Difficulty swallowing or speaking: Sometimes MS will make it hard to swallow or talk properly. If someone has MS, they will likely have other symptoms as well (such as numbness or tingling), but it’s helpful to be aware of all the ways the condition can manifest.
When should you see a doctor?
If you experience any of the symptoms mentioned above and it either doesn’t go away or it goes away and comes back repeatedly, see your primary care doctor. They should refer you to a neurologist for a more in-depth evaluation. “If you’re not getting the information that you need, or you feel like your doctor is not listening to you, it’s okay to seek a second opinion,” says Dr. Williams. Remember, MS can be diagnosed in otherwise-healthy people so don’t just dismiss your symptoms and assume they’ll go away on their own. “As with almost any disease, certainly with MS, we do want to find out about it early because we can treat it,” adds Dr. Giesser, who notes that MS damage accumulates in the majority of people who have the disease but aren’t treated for it.
How is MS diagnosed?
“It would be nice if we had something for MS that was definitively negative or positive like a pregnancy test,” says Dr. Giesser. Alas, that’s not the case. “We don’t have a surefire test — what we call a pathognomonic test — so we have rules,” says Dr. Giesser. These are the rules that must be met for a diagnosis of multiple sclerosis:
- There must be objective evidence of damage in more than one area of the central nervous system (hence the term “multiple”).
- “There used to be a rule that you had to have more than one episode — what we call dissemination or multiplicity in time or space — more than one spot and more than one attack,” says Dr. Giesser. “We have some updated criteria which say even if somebody’s only had one attack, if they show simultaneous inflamed and non-inflamed spots on an MRI or if they have certain abnormalities in their spinal fluid, that counts for having a second attack.”
- Other reasonable diagnoses must be ruled out.
“It’s important to see a neurologist to get a neurologic exam and they’ll also take a thorough history to see if you’ve had other symptoms in the past that may be typical of multiple sclerosis,” says Dr. Williams. “Then they’ll do an examination to see if you have signs of damage to your nervous system or possibly symptoms that we can pick up as abnormal on your exam that you may not have noticed. The next part is that there are certain tests that can be done.” Like Dr. Giesser said, there isn’t a single test that will tell you if you have MS, but there are blood tests that can pinpoint other conditions or vitamin deficiencies. Additionally, you’ll likely get an MRI of the brain and/or spine to look for internal signs of MS. “Sometimes if there’s concern that you may have something else going on, a lumbar puncture or spinal tap and visual testing called visual evoked potentials may be done to rule out other things,” adds Dr. Williams.
How is MS treated?
“The reason it’s important to go see a doctor is because this is a very, very treatable condition,” says Dr. Giesser. Disease-modifying medication combined with exercise, following a healthy diet and not smoking can help to control multiple sclerosis. “MS is a disease that was first recognized in the 1800s and there were not approved therapies for MS until 1993,” says Dr. Williams. “But from 1993 until now — 2022 — we have over 20 treatments for MS so the treatments have really just exponentially increased and the way that we treat MS has become so much more effective over time.” Crucially, some of these treatments can actually slow the progression of MS and prevent future damage. “But getting on a stable treatment plan with a neurologist is extremely important to good outcomes,” Dr. Williams adds.
Who gets MS?
Most people are between age 20 and 50 when symptoms start, although MS can affect folks who are older or younger than that. “Previously MS has been thought to be a disease that primarily occurs in people of Northern European ancestry, but we’re finding that the rates of MS are actually very high in other populations such as Black or African American groups,” says Dr. Williams. “So it’s important to recognize that anybody can get MS and you shouldn’t ignore symptoms if you’re not from a group that has been traditional thought to have multiple sclerosis.”
Other MS FAQs:
Does MS present differently in women and men?
“Most autoimmune diseases do affect women more than men,” says Dr. Williams. “In the case of MS, it’s three times more common in women than men — but the symptoms are not different based on sex.”
Does MS affect fertility?
“MS does not affect or interfere with a woman’s ability to conceive,” says Dr. Giesser. “In fact, during pregnancy, women with MS are relatively protected.” That’s because a baby gets half of its genetic material from its father — an organism that is separate and different from the mother. “Normally the immune system would think part of this thing growing inside the woman is foreign and it would attack it,” explains Dr. Giesser. “But in all women, our immune systems are turned down when we’re pregnant so this actually turns out to be a good thing for women with MS.” Since MS is an autoimmune condition, women tend to experience a respite from MS exacerbations during pregnancy because their immune systems are directed to stand down.
Does MS affect menstruation?
“MS does not interfere with people’s menstrual cycle, but some women will notice symptom variation during their cycle,” says Dr. Giesser. For instance, some research has found that women with MS may experience a worsening of MS symptoms right before their periods.
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