Managing multiple sclerosis (MS) isn’t a one-size-fits-all situation. The disease is complex, and it comes with chronic, often painful symptoms that change over time.
No wonder many people feel overwhelmed trying to get a handle on the unpredictable nature of their symptoms, says Kathy Costello, C.R.N.P., associate vice president of healthcare access with the National MS Society.
Part of what makes MS so confusing is that the cause of the disease is still unknown, and each patient will progress and experience symptoms differently, adds Eoin Flanagan, M.B., B.Ch., a neurologist with the Mayo Clinic who specializes in MS.
We do know that MS is an autoimmune disease that occurs when the body mistakenly attacks myelin, the protective layer that surround the nerves in the brain and spinal cord. The damaged areas are called plaques or lesions.
“Patients may grapple with different issues at different stages of their life and their disease,” Dr. Flanagan says. But many of the most common questions remain the same. We’ve got answers for six that doctors hear over and over.
Question #1: My MRI shows new lesions, but I’m not having as many symptoms. How can this be?
All patients with MS develop lesions on the spinal cord and brain. These lesions can happen with varying severity, and doctors monitor the disease progression through magnetic resonance imaging (MRI), Dr. Flanagan explains.
It’s fairly common for someone with MS to have a lot of active lesions on their brain MRI but not have new symptoms. This may have to do with where the lesion develops, Dr. Flanagan says. There are three areas of your central nervous system that are impacted by MS: the spinal cord, the brain, and the optic nerve.
The nerves in the brain are more spread out compared to the nerves in the spinal cord or in the eye, where they’re more compacted. When a lesion develops in the brain, you may not have symptoms right away. However, you’re more likely to have symptoms from lesions on the spinal cord, Dr. Flanagan says.
“Similarly, if you have a lesion along the optic nerve in the eye, it’s more likely to cause a problem with your vision,” he says.
Question #2: Why am I having new symptoms, but not seeing any new lesions on my MRI?
This situation is called pseudo-relapse, Dr. Flanagan says. Pseudo-relapse symptoms may include optic neuritis, or inflammation of the optic nerve that impairs vision, problems with balance, weakness in the legs or arms, pain, or severe fatigue.
A pseudo-relapse may be caused by a virus or other infection that is taxing the person’s neurological system. It could even be caused by an increase in body temperature following exercise or a new medication.
“For people with MS, their neurological system is a weak point for them,” Dr. Flanagan says. “A viral illness or a urinary tract infection, for example, can re-trigger symptoms that they had in a previous MS episode.”
However, these pseudo-relapse symptoms are not from new active MS inflammation; instead some other outside factor has exacerbated an older lesion, Dr. Flanagan explains. When the underlying trigger is recognized and treated, you can get back to baseline.
The takeaway: If a patient who has had MS for many years and hasn’t had many symptoms for a while suddenly starts developing new or worsening symptoms, he or she should see their doctor to check for an underlying virus or infection, Dr. Flanagan says.
“They should make sure they don’t have pneumonia, a urine infection, or a flu-like illness, as any of these may be mimicking an MS attack,” he says.
Question #3: Everyone says I look so great, but I feel awful. What’s going on?
MS is a disease with many invisible symptoms, Costello says. This can be very frustrating to the person living with MS because it’s hard for those around them to understand what they’re going through.
While no two people will experience MS the same way, fatigue, pain, and bladder issues are among the most common unseen symptoms, Costello explains. Up to 90% of people with MS experience a type of severe fatigue, known as lassitude.
“Lassitude is described as not being able to move another muscle or think another thought without rest,” Costello says. “This is different than the kind of fatigue we all experience, where we didn’t get a lot of sleep and we’ve been running around all day.”
It’s important to let those around you know what you’re going through. It’s also important for friends and family to understand that just because a person with MS looks fine, it doesn’t mean they aren’t experiencing symptoms, Costello explains.
Question #4: What’s the difference between nerve pain and musculoskeletal pain?
Pain affects at least 65 percent of people with MS, Costello says. There are two main types that patients experience:
- Neuropathic pain, or nerve pain, is caused by damage to the nerves in the brain and spinal cord. This includes burning, throbbing, or searing pain, but it can also include numbness or a pins-and-needles sensation. Examples of MS-related nerve pain include uncomfortable sensations in the side of the face, called trigeminal neuralgia, and a tight feeling, often around the chest, called the MS hug. Pain in the limbs is also very common.
- Musculoskeletal pain, or nociceptive pain, is caused by weakness and damage to muscles, tendons, ligaments, and other soft tissues. Muscle stiffness and spasm are called spasticity.
“Pain, especially nerve pain, can be miserable to live with,” Costello says. “Someone may have pain that they would rank as an eight to 10 in severity, sometimes worse at night. This means they’re not sleeping well, which only compounds the fatigue they may feel during the day.”
Pain has been a constant for Trevis Gleason since he was diagnosed with MS in 2001. Gleason grew so frustrated with excruciating nerve pain in his foot that he once asked his doctor if the pain would go away if he amputated it.
“My doctor told me, ‘The pain isn’t in your foot,'" he says. Instead, he explained that there's damage to a nerve somewhere between his brain and his foot, and that lesion is scrambling the signal.
The doctor’s explanation didn’t make the pain go away, but it did help him understand what was going on, says Gleason, has written a book about his experiences with MS called Chef Interrupted.
Question #5: Why does MS so commonly cause bladder dysfunction? And what can I do to control it?
Bladder issues are very common in people with MS—up to 80% deal with some form of bladder dysfunction, according to the National MS Society. This happens when nerves that control the bladder and urinary sphincters are damaged by MS lesions, possibly leading to an overactive bladder that’s unable to hold the normal amount of urine, Costello explains.
Urinary problems may cause feelings of urgency to urinate or needing to urinate frequently. Some people may have wetting accidents or be unable to empty their bladder completely, which can increase the risk for urinary tract infections. You may also have to get up multiple times per night to use the bathroom, which isn’t great when you’re already exhausted, Costello says.
Bladder dysfunction can be embarrassing, but there are several medications and interventions that can help, Costello says. Some medication-free strategies include:
- Percutaneous tibial nerve stimulation (PTNS). This is a type of electroacupuncture. A small needle electrode is inserted into the ankle, and it transmits a signal to the sacral plexus, a network of nerves that controls the bladder and pelvic floor muscles. Patients usually have 12 weekly 30-minute treatments, which can help relieve overactive bladder symptoms.
- Injections of botulinum toxin, or Botox, into the bladder muscle, which causes partial paralysis and targets the nerves that control the sensation of urgency.
- Lifestyle changes, such as limiting or avoiding caffeinated beverages or alcohol, which can irritate the bladder or increase the urgency to urinate, Costello explains. But don’t shun all fluids, as it’s important to maintain proper hydration. “Not drinking any fluids is more irritating to the bladder than maintaining good hydration,” Costello says. “Limiting fluids in general—not specifically caffeinated beverages or alcohol—can significantly make bladder symptoms worse.”
Question #6: Why does MS affect more women than men? And how does pregnancy or menopause affect MS?
It’s unknown exactly why MS affects more women than men, but medical professionals have long noted that in general, women are more likely to have autoimmune diseases of all kinds, Dr. Flannagan says.
Women are two to three times as likely to get MS as men, according to research from the National Multiple Sclerosis Society. This may be because MS has some link to fluctuations of hormones, such as testosterone and estrogen—a theory supported by the fact that many women find they don’t have as many symptoms during pregnancy, Dr. Flannagan says. However, women may be at risk for a relapse, where symptoms become more acute, in the months after giving birth.
That’s not always the case, says Holly Hill, 51, who has lived with MS for more than 30 years and has a 16-year-old daughter.
“When I was pregnant, my experience was that it was the best I ever felt,” says Hill, who lives in the Seattle area. “I was really afraid that after I gave birth, I would have an attack. But that didn’t happen for me.”
However, Hill notes that her MS progressed more rapidly after she went through menopause, something that may affect as many as half of women with MS, according to one survey.
“I don’t have attacks anymore, but I’m definitely declining and losing functionality and mobility,” Hill says. “That seemed to correspond with menopause. I’m very heat sensitive, and when the hot flashes started and my body temperature was changing all the time, my MS started getting worse.”
If you can relate to this or any of the potentially confusing symptoms above, call your primary care provider to schedule an appointment. He or she can answer your questions and suggest further treatment if needed.