Multiple sclerosis (MS) is an insidious disease where destructive lesions in the brain and spinal cord interfere with practically every physical process in the body. No two people have the exact same set of symptoms, which can range from the annoying to the disabling. And that's why many MS specialists are saying that the management of MS symptoms should also vary from person to person.
In MS, the body mistakenly attacks its own myelin, the fatty tissue that insulates the nerves in the central nervous system, leading to attacks or flare-ups of MS symptoms. Disease-modifying drugs are given to decrease the frequency of those attacks and to slow down the progression of the disease.
"But treating the pathology of MS does not necessarily translate into treating symptoms of the disease," says Heidi Crayton, MD, co-director of the Multiple Sclerosis Center at the Georgetown University Multiple Sclerosis Center in Washington, DC. "I believe it is when people's symptoms aren't being addressed that they stop taking their disease-modifying drug, because they don't feel any better."
Treating MS symptoms can help people not only stay on their disease-modifying drugs but also feel better. And effective symptom management, Dr. Crayton says, starts with good doctor-patient communication. In an MS center, the neurologist will oversee symptom management, but outside of a center, the neurologist might refer a patient to other specialists or to the primary care doctor. Healthology talked with Dr. Crayton to get an overview of MS symptoms and to find out how addressing even minor symptoms can make the difference.
What are the most common MS symptoms?
Most people have symptoms from their MS that affect their quality of life on a day-to-day basis. Probably the most common symptoms are fatigue, spasticity, bladder and bowel dysfunction, cognitive dysfunction (problems with thinking and remembering), sexual dysfunction and pain. The symptoms can occur by themselves or in conjunction with other symptoms and when they build up, MS becomes a lot more disabling.
How do you approach the treatment of such a wide range of symptoms?
Doctors and patients often get very overwhelmed and are not quite sure where to start. It really is a kind of a negative feedback loop. For instance, if somebody's fatigued and depressed, they're not very likely to exercise. And, as the level of exercise decreases, spasticity increases and so does constipation. And if you're more spastic and constipated, you have a full colon, so you usually develop bladder problems. And if you have bladder problems, you're probably not getting good sleep. And if you're not getting good sleep, then you usually experience cognitive deficits. And cognitive deficits feed into fatigue and depression. So it is a very vicious cycle and you just have to dive in.
Do symptoms always need to be treated?
I ask the patient whether or not they want a symptom treated; that's a very important step that we don't always pay attention to. For example, there have been situations where I treated spasticity, stiffness usually in the legs and sometimes the arms, in people who are very weak. But I found out that the treatment ended up disabling that person even more, because somebody with absolutely no strength in their legs sometimes relies on stiffness to be able to stand up or to support their bodies. So sometimes when I would treat spasticity, I would take that support away and then they'd have noodle legs. So, I've certainly learned that if it's not really bothering the patient, then it shouldn't be treated.
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How do you treat spasticity when it is bothersome?
Spasticity involves increased muscle tone, jerkiness or spasms. It often gets worse as muscles get weaker. Sometimes, it's very painful to have very tight, contracted muscles. Some patients refer to it as their "sewing-machine" leg because it kind of bounces around. It can very bothersome, especially at night.
Management of spasticity first starts with movement because muscles that don't move become more spastic. So I recommend that people stretch in the morning and evening. For people who are in a wheelchair, passive range-of-motion exercises, where someone else is lifting your limb, is wonderful. Also, yoga and working in the water can be very helpful for managing spasticity.
If that is not sufficient to control spasticity, then we use a type of muscle relaxant. We start with minimal amounts of medicine and slowly increase it as the patient needs and as they are able to tolerate.
How do you treat bladder problems?
There are three different kinds of MS bladder problems. The bladder is ultimately just a big muscle. Some people have spasticity of their bladder, which means that when a little bit of urine comes down from the kidneys, their bladder starts to contract very quickly and they feel like they have to get to the bathroom right away.
The other kind of bladder is one that becomes a big, floppy muscle. Normally, our brain receives the first signal that there is urine in the bladder at about 250 cc's, but we can override that and still hold it. Well, these people don't get that signal. Their bladder fills and fills until it just spills over. Those people then become incontinent, which can be very disabling. Then there are people who have a combination of symptoms and they are tied to the bathroom.
Depending on which of those issues is the prominent one, we do have some things that we can implement. When the bladder is spastic, we can use medicines that quiet down that irritability and spasticity. In people who have a difficult time getting urine out, pressing on the bladder can help to completely empty it. Sometimes, people have to start using a catheter and many patients, when they hear that, feel like that's the beginning of the end. I try to explain that it can be very liberating once they're the ones who are able to control the function of their bladder. It is relatively simple to learn how to do.
How do you treat bowel problems?
We most commonly think about that in terms of constipation, but some people have difficulty with loose or explosive stools. A lot of people have bladder problems, so they don't want to drink water. But for your bowel function to be optimal, you need two liters of water a day and 30 g of fiber. For somebody who has to pee every five minutes, when they hear "two liters," they say, "You're crazy." And I say, "You know, there are going to be times when you're home and close to the bathroom and, at those times, you need to catch up on your fluid intake." After all, fiber with no fluid equals cement, so you can end up making the problem much worse.
For people with loose stool or explosive stool, the treatment is actually the same—fiber—which sounds very counterintuitive. But bulking up the stool helps the sphincter function better. There are medicines that we can use as well, but we try to start with fluid and fiber.
How do you treat fatigue?
About 92 percent of patients with MS experience fatigue and it can be something that they experience to a low degree or to a disabling degree. Even doing the activities of daily living, just to get themselves ready to go to work, can leave them so wiped out that they really can't function. Fatigue can lead to cognitive symptoms such as forgetfulness, difficulty concentrating and the ability to multitask. Sometimes, it's the most difficult symptom because people often don't have a visible physical disability, so family members and coworkers don't understand why they can't be productive.
The very first thing to do with fatigue is start with sleep. Sometimes it takes time to delve into why somebody may not be getting good sleep. It may be because they have spasms of their legs. It may be because they're waking up to go to the bathroom every five minutes. It may be because they're just having a hard time quieting their brain down.
The other thing that is sometimes missed is other medical issues. It's always important to check somebody's thyroid status. Some medicines, such as beta-blockers for high blood pressure, antiplasticty medicines or other medicines, can make people feel fatigued.
After all of those things are sifted through and somebody is able to get good sleep and they're still fatigued, we do have medications such as stimulants and amphetamines. For patients of mine who don't have problems with their bladder, caffeine is a wonderful drug, so they'll have a cup of coffee at 3 pm. Exercise is also important. Energy really does produce energy, so it is an effective way to help combat fatigue.
Do you see a lot of depression?
Yes, there's a high incidence of depression with MS. Part of it is just the disease process itself and some of it is difficulty with dealing with having a disabling disease. It also tends to co-occur with pain or fatigue. But there still is such a stigma in our society about depression that people often feel that they're just not doing a good enough job coping with their disease, so they are hesitant to discuss it and get help for it. But MS support groups, talk therapy or antidepressants can make a big difference.
What kind of pain do people have and how do you treat it?
Pain is such a variable symptom. It can be from muscle spasms. It can be various sensations that people have a very difficult time describing, such pins-and-needles sensations, burning sensations, numbness or hypersensitivity. There's also a syndrome called trigeminal neuralgia, experienced by about 5 percent of people who have MS, which results in pain in the face that feels like being stabbed by a knife.
We can often manage pain syndromes with anticonvulsant medicines and/or certain types of antidepressants. But pain, probably more than any other symptom, is a symptom that is tailored to the individual patient. It's really a matter of trying different medicines, increasing the doses, adding certain medicines in combination. You have to just keep plugging away until you have success.
How can people cope with sexual dysfunction?
I think sexual dysfunction is experienced by just about everybody with MS and nobody talks about it. Sometimes medicines are the issue. For example, people who fail to achieve orgasm often experience that as a side effect of other medicines. For men, sometimes it's because their spinal cord is involved, which can result in erectile dysfunction. And, of course, that's relatively simple nowadays to treat with the whole host of erectile dysfunction products that are on the market. Another problem that can occur in men is increased or decreased sensation in the entire genital region and that's more difficult to overcome.
Women can experience a lack of sensation or too much sensation as well. And both men and women can be so incredibly hypersensitive that any kind of touch is painful. For women, sometimes the issue is vaginal dryness and we can often work around that with lubricants and estrogen creams.
Very often, psychological factors come into play with fear of a spouse hurting their spouse with MS who might have some muscle weakness. An anxiety-provoking issue for people with MS is loss of bladder control. A lot of these things can be overcome with communication between partners or by introducing sex aids to really help heighten sexual experience. Of course, we also have to remember that intimacy is often more than sex.
What is your advice to people who want to better control their symptoms?
The most important thing is that symptoms have to be communicated. And symptom management has to be just as important as disease management. People don't have to live their days feeling bad because of their MS. There's a lot that can be done in terms of symptom management. But sometimes it really comes down to patient self-education, so that patients can really be their own best advocates.
