Online Health Chat with Mary Willis, MD
April 16, 2014
If you or someone you love has been diagnosed with multiple sclerosis (MS) or experience a first-time MS event, you should consider talking about starting treatment options with your healthcare team as soon as possible. Finding the right treatment options including disease-modifying drugs, physical therapy, exercise, good nutrition and a balanced lifestyle can help ease your symptoms and adjust to living life with a chronic illness. The most important goal is to find a treatment plan that you can use comfortably and consistently.
Multiple sclerosis (MS) is a central nervous system disorder-that is, it affects the brain and spinal cord and spares the nerves and muscles that leave the spinal cord. MS is an inflammatory disorder in which infection-fighting white blood cells enter the nervous system and cause injury. It is a “demyelinating disorder” because the myelin sheath that protects nerves is stripped off during inflammation. When this happens, the nerves cannot conduct electricity as well as they should, causing various symptoms. Symptoms may be the type that come and go over time (relapsing-remitting MS) or progress over time (progressive MS). MS can happen to just about anyone and is long-term.
Medications can reduce the frequency and severity of symptoms in people with MS while some can slow the progression of certain types of MS. In addition to disease-modifying drugs, incorporating physical therapy, exercise, and good nutrition will help create a balanced lifestyle for those living with the chronic illness.
Each person’s MS is different and you should work with your healthcare provider to identify a treatment plan that will help you achieve the best results.
About the Speaker
Mary Willis, MD, is a staff neurologist in Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research. She is board certified in neurology. Dr. Willis clinical and research interests include multiple sclerosis, acute disseminated encephalomyelitis (ADEM), Devic disease (neuromyelitis optica), optic neuritis, neuroimmunology, and transverse myelitis.
Dr. Willis completed her clinical neuroimmunology fellowship at Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research. She completed her residency in neurology and internship in internal medicine after graduation from medical school, all at the University of Mississippi Medical Center, in Jackson, MS. She is currently on the board of directors for the Multiple Sclerosis Association of America and a member of the National Multiple Sclerosis Society and the Consortium of Multiple Sclerosis Centers.
Dr. Willis sees patients at the Mellen Center at Cleveland Clinic main campus.
Let’s Chat About Treatment Options for Multiple Sclerosis
Moderator: Let's begin with your questions.
Multiple Sclerosis Diagnosis
sassie: When someone is diagnosed with multiple sclerosis (MS), would you recommend getting several opinions with various physicians?
Mary_Willis,_MD: That depends on how comfortable you are with the diagnosis. If you feel that the right testing has been done and that you're on the right course, you can move forward without getting another opinion. However, if you have any question in your mind about the diagnosis or the treatment options discussed with you, you should absolutely consider a second opinion. Although the second doctor may say the same thing as the first, you and your family will have some peace knowing that you're on the right track.
Types of Multiple Sclerosis
Smitty: Can you talk about the different types of multiple sclerosis (MS)—relapsing, remitting and progressive?
Mary_Willis,_MD: The categories of MS are basically descriptions of how someone's MS has behaved. For example, someone who has attacks or relapses characterized by new symptoms lasting for at least a few days will often gradually improve over a few weeks or months. Although they may not completely recover, they may not experience another episode for months or years. This would be a typical relapsing-remitting MS course which is the most common type of MS. Eight five percent of patients have RRMS at the time of diagnosis. If someone who initially had RRMS notices slow, worsening over time without further relapses or changes in MRI, we call this secondary progressive MS (SPMS). So this is a description we use if someone had relapses in the past, but is no longer having new things happen. This is not really a separate type of MS but really a different stage of MS. Primary progressive multiple sclerosis refers to a type of MS that usually involves gradual worsening without any history of relapse or attack. This type of MS is not very common—only affecting maybe five to 10 percent of patients—and can be more challenging to diagnose.
Secondary Progressive Multiple Sclerosis
medic: I have secondary progressive multiple sclerosis (SPMS) and would like to know if there is anything I can do? Everything I see is for relapse remitting multiple sclerosis (RRMS), and I do not know what I should or should not be doing. I currently take Neurontin® (gabapentin), baclofen, Provigil® (modafinil), vitamin D and Paxil® (paroxetine). My neurologist just tells me to keep on these and says there is nothing else she can do. She said to call if there are any problems, or I get worse. Otherwise, she will see me once a year.
Mary_Willis,_MD: A big myth in secondary progressive MS is that there’s nothing else to do. It is true that all of our MS medications are approved for treating relapsing forms of MS. This has to do with how the medications work to prevent relapses and MRI changes. Many people with secondary progressive MS do not have relapses or MRI changes, so the role for these medicines that modulate the immune system is less clear. Some of these medications are being investigated for the potential to slow disability progression or provide neuro-protection. Other compounds like ibudilast and techniques like stem cell therapy are being explored for people with SPMS. You may consider participating in one of these trials if you are interested and if it is feasible for you. So what can you do right now? There is very good evidence showing that your overall health is incredibly important in managing MS even when you are not on MS medications. Conditions associated with vascular disease—high blood pressure, high cholesterol, diabetes and smoking—accelerate disability associated with MS. Attention to these and other details (like exercise and healthy diet) are more important than ever. Of course, the medicines that you mentioned for MS symptoms can be helpful. From time to time, you and your doctor should evaluate whether these medications are working for you or if something else would be better.
Multiple Sclerosis Symptoms and Fatigue
Cissy: Do you have any suggestions how to deal with the extreme fatigue associated with multiple sclerosis (MS)?
Mary_Willis,_MD: The first step is to rule out other medical reasons for fatigue. Unfortunately, having MS does not mean that you can't have other health problems. I usually check for anemia, thyroid problems, kidney problems and vitamin deficiencies. It is also important to consider sleep problems. If sleep apnea is present, a BiPap® (bilevel positive airway pressure) or CPAP (continuous positive air pressure) device to improve the sleep quality will also help with fatigue. Other sleep issues should also be investigated and addressed. A lack of physical activity can also contribute to fatigue. It is important that your daily routine include some form of exercise, but don't get carried away. Exercising too hard—to the point that you need to rest for a few days before you do the activity again—is counterproductive. Cooling devices like vests and scarves can be helpful when heat is an issue. From a medication standpoint, there is no one medication that works well for everyone and there are no medications specifically approved for MS fatigue. An old antiviral medication called Symmetrel® (amantadine) sometimes helps. Provigil® (modafinil) is often used off-label for MS-related fatigue. When fatigue is disabling, we sometimes consider using stimulant medications.
bus: I was recently diagnosed with multiple sclerosis (MS). I have no lesions on my MRI, but I am textbook MS as far as signs and symptoms go. How common is this?
Mary_Willis,_MD: Many of the symptoms of MS overlap with symptoms of other conditions. I would really look hard for another explanation if there were no lesions on MRI brain and cervical spine.
bus: Is there any way to decrease the uncomfortable multiple sclerosis (MS) “hug”?
Mary_Willis,_MD: If the MS “hug” is a relatively recent thing, it will often improve somewhat over time. Antiseizure medications such as Neurontin® (gabapentin) and Lyrica® (pregabalin) will sometimes help as well. Of course, the decision to try a medication should always depend on how much it bothers you. If it is just annoying but doesn't interfere with your ability to sleep or do your regular activities, it may not be worth the side effects that go with the medications.
sassie: I am unfamiliar with this term "hug". What does this mean?
Mary_Willis,_MD: The MS “hug” describes a band-like feeling—usually around the chest or waist. This is associated with an MS lesion in the spinal cord. Some people say, "I feel like I'm wearing my bra when I'm not."
Multiple Sclerosis Pain
tbdms83: What treatment options are used to treat multiple sclerosis (MS) pain?
Mary_Willis,_MD: The first step in determining the best treatment option is determining what type of pain is present. For example, pain can be due to spasticity or stiffness and resistance to movement. This pain is treated much differently from neuropathic pain that is often described as burning, prickling and pins-and-needles pain. Pain can also be due to early wear on the joints from walking problems or abnormal positioning of the arms and hands. For neuropathic pain, the most commonly used medications are those that were originally developed to treat other conditions such as epilepsy and depression. These medications act directly on chemicals in the nervous system in a similar way to reduce pain. Examples of anti-seizure medicines used for MS pain include Tegretol® (carbamazepine), Neurontin® (gabapentin), Topamax® (topiramate) and Lyrica® (pregabalin). Antidepressants that also help with pain included Celexa® (citalopram hydrobromide), Cymbalta® (duloxetine), Elavil® (amitriptyline) and Pamelor® (nortriptyline). There is very little evidence that opiate pain medications help, and they can cause problems such as cognitive impairment and constipation. If pain doesn't respond to the medicines listed above, I often recommend a consultation with a pain specialist to take a more detailed look at the less common options.
Bladder and Bowel Issues
KLM: Bladder and bowel problems—how common are they with multiple sclerosis (MS), and are there any preventive measures to take to avoid issues down the road?
Mary_Willis,_MD: Bladder and bowel problems are extremely common with MS although they may not be present early on in the course. They are often associated with lesions in the spinal cord. However, it is possible to have MS and never have bladder or bowel issues. Bladder problems are often ignored until someone has difficulty controlling their bladder. The best way to prevent future problems is to recognize the early signs: frequent bladder infections, waking up several times per night to urinate, urinating more frequently than you used to or than others around you, or difficulty emptying your bladder all the way when you do go.
Vision Loss and MS
lsp: I was diagnosed with multiple sclerosis (MS) in August when I lost vision in both eyes. I did the steroid treatment and it definitely helped, but I still don't have all of my peripheral vision back. I was wondering if there is anything else that can be done?
Mary_Willis,_MD: First, when someone loses vision in both eyes at the same time we worry about a condition that is sometimes misdiagnosed as MS. If you haven't already been tested for neuromyelitis optica (a blood test), you may want to discuss this with your doctor. Second, recovery from an attack often takes much longer than any of us would like. Nerves repair very slowly. I don't think you've reached your maximum recovery yet. I don't think another course of steroids or a procedure like plasma exchange would be helpful this far after your attack.
bus: I understand there are different kinds of MRIs. Do you recommend any certain type being used to diagnose?
Mary_Willis,_MD: I recommend an MRI brain and cervical spine with and without contrast at the time of diagnosis. For spinal cord imaging, I would avoid an open MRI. These particular machines do not give us a great picture of the brain, and often don't do an adequate job for the spinal cord.
COCOBEAN: I had been taking Rebif® (interferon beta-1a) for a few years and felt awful. The side effects were brutal. Then I went on a low-dose naltrexone (LDN). The results were/are amazing, and I had no side effects. There has been no change in my MRI for two years. I am aware that LDN is not FDA approved for multiple sclerosis (MS). Are there any downsides to this course of treatment?
Mary_Willis,_MD: Some people can’t tolerate the interferon medications (Avonex®, Rebif® and Betaseron®) because of flu-like side effects, headache, fatigue, injection site reactions or other reasons. I wouldn’t recommend staying on a medication that makes you feel awful when we have so many other options now. The clinical trials of low-dose naltrexone (LDN) produced mixed results. Overall, I would say LDN may reduce symptoms in many people, but it does not seem to have an effect on relapses or the progression of the disease. I do not see any downside to continuing LDN if you feel that it helps with your symptoms, but you do still need to be monitored with neurological exams and MRI to make sure that nothing is going on underneath the radar. We follow a similar strategy when someone is off medication because of another situation or health issue in which use of medication would be a hardship or a safety concern. Sometimes we never need to restart medication, but the two most important points are: your medicine shouldn’t make you feel awful, and you should keep regular neurology follow-up appointments even if you are not on one of the FDA-approved medications.
msquestion: My husband was just advised to switch to Tecfidera® (dimethyl fumarate) after being on Avonex® (interferon beta-1a) for a year. Although he had reduced active lesions on his MRI, he still had one active lesion and that was the reason for the switch. For the most part he is feeling o.k. He is concerned about the less talked about side effects and/or the very rare ones (PML [progressive multifocal encephalopathy] and reduced white blood cell count). He is also concerned about a potential flare up during the medication switch, since he was just promoted at a new job and has no "wiggle room" in his job right now. He also is concerned that since Tecfidera® is newer on the market that there isn't long-term study data like Avonex®. Any thoughts?
Mary_Willis,_MD: I agree with a switch off Avonex® if he has an active lesion. The active lesion indicates that Avonex® was not controlling his multiple sclerosis (MS) all the way. None of our medications are completely effective—they are not cures, but we can often get people to what we are calling a disease activity-free state—no relapses and nothing new on the MRI. Next, when switching from Avonex® to Tecfidera® there is no need for a wash-out period. He can take his last shot of Avonex® then start Tecfidera® the very next day. There should be no gap in coverage when done that way. The effects of Avonex® will still linger for a few weeks after stopping the medication. This should give the Tecfidera® some time to build up in his body. Occasionally someone will have a relapse even when we switch this way. It's ok to use steroids if new symptoms suggestive of a relapse develop. Although Tecfidera® is new to the MS market, many people who were in the clinical trials have now been followed for several years after the trials ended. So we do have MS patients on Tecfidera® for about five years. Tecfidera® is also similar to a medication that has been used for many years to treat another autoimmune condition (psoriasis) in Germany. I think the amount of experience with this medication and the extremely low rate (and I stress extremely low rate) of severe complications like PML are very reassuring.
Treatment for Relapsing/Remitting MS
BigRog200: For a newly diagnosed person with mild relapsing/remitting illness, can taking interferon-type drugs right away help prevent the progression to progressive illness in the future?
Mary_Willis,_MD: The short answer is that we absolutely believe that early treatment of multiple sclerosis (MS) makes a difference in the future of someone’s MS. Although many people recover completely from early relapses, these relapses and lesions (or spots) on MRI represent tissue damage. Several early MRI studies showed that some people have 10 to 20 new lesions for each relapse. This ongoing injury sets the stage for later disability. The disease-modifying therapies—including interferons—are intended to prevent relapses and to prevent new MRI lesions.
Treatment for Cognitive Issues
tbdms83: What medications are being used now or researched at this time to treat the cognitive issues associated with multiple sclerosis (MS)?
Mary_Willis,_MD: There is currently a huge amount of interest in researching cognitive issues from many angles. Researchers are studying the relationship between MRI changes and cognitive symptoms. We are currently looking at different ways to measure cognitive function—ways that do not involve hours of testing in a doctor's office. Medications used for Alzheimer dementia have been tested and don't seem to help. Depending on the specific cognitive issues, stimulant medications that improve concentration may be helpful. Some trials evaluating neuroprotective compounds for progressive MS are including measures of cognitive function to determine if these molecules have an impact there.
Alternative Therapy, Supplements and Vitamins
BigRog200: Is it important a person with multiple sclerosis (MS) keep their vitamin D levels at a high level? How high should it be?
Mary_Willis,_MD: Vitamin D is important in MS for many reasons. People with MS are at higher risk for developing osteopenia and osteoporosis. Vitamin D is important for maintaining bone density. In addition, vitamin D appears to have immune-regulating effects. Low blood levels of vitamin D are associated with a higher risk for developing MS and a higher risk for MS activity. There is currently no agreement on how high is high enough and there is some concern about oversupplementation. At the Mellen Center at Cleveland Clinic, we want our patients to have a level between 30 and 50. If someone is low in vitamin D, we typically use a prescription strength replacement—ergocalciferol (vitamin D2) 50,000 units per week—for eight weeks followed by over-the-counter vitamin D 2,000 units per day.
tbdms83: What can you tell us about the B vitamins? Is supplementing with B complex helpful for MS patients?
Mary_Willis,_MD: Some of the B vitamins can cause or worsen neurological symptoms if there is a deficiency. B12 deficiency is most common. Low levels of B12 can results in abnormal sensations, overactive reflexes, fatigue, cognitive symptoms, etc. There's no such thing as too much B12. You can take supplements to see if it helps even if your blood level is normal. You have to be careful with B complex though. Too much B6 can also cause neurological symptoms. Avoid forms of B complex that have high levels of +B6.
BigRog200: Are you familiar with "BX Protocol" and its use in treating multiple sclerosis (MS)?
Mary_Willis,_MD: I do not have personal experience with the BX protocol in patients with MS but I have heard of it. BX Protocol (or Antitoxin) is a plant-based treatment that has been touted as a cure for various types of cancer and autoimmune diseases including MS and lupus. Although I support the use of complementary therapies, I am wary of something with such high claims but very little supportive evidence. My primary concern is the risk for harm associated with some of the plant compounds. It is true that some of the most effective medications are derived from plants, but remember that some of the worst poisons also come from plants. I do not advise using a product that cannot produce robust safety data.
BigRog200: Are you familiar with Protandim? Could it help in boosting the positive effect of antioxidants in the body?
Mary_Willis,_MD: Protandim is a supplement that is not regulated by the FDA so we don’t know exactly what is in it. According to the makers of the supplement, the primary ingredients are milk thistle, bacopa, ashwagandha root, green tea extract and turmeric. These compounds have been used in traditional Chinese and Indian medicine for many ailments and some do appear to have antioxidant qualities. While it has not been tested for the efficacy in multiple sclerosis (MS) patients, I do not have any specific concerns about the possibility that any of these compounds could worsen MS. At the dose listed on the bottle, the potential for medication interaction is probably low. Since my experience with this supplement used with other medications is limited, I would consider watching your laboratory results—blood count and liver tests—for any unexpected results of the combination of medications and supplements. You should always let your doctor know if you are taking any type of supplement.
MS Biomarker Research
magnet: In February I heard about an antibody linked with multiple sclerosis (MS) that might be detectable in the blood of people with the disease before symptoms appear. Is this being utilized or is it still in clinical trials?
Mary_Willis,_MD: We have been searching for markers in the blood and spinal fluid for many years. We are looking not just for an antibody or other marker to diagnose MS, but also markers for what type of MS and markers that would predict a response to medication. There are several biomarker trials in progress currently. Many of them are listed on www.clinicaltrials.gov. I am aware of a company that markets a kit that includes blood tests for antiglycan antibodies to predict who will develop MS. This test is not very sensitive. In other words, false negative results are common. It is not a good tool to rule out MS. It is also not enough to diagnose someone with MS or to tell when someone will develop MS—will it be 5, 10, 25 or 50 years, or never after the test? We don’t know. I think this research is very promising and worthwhile, but we don’t have anything definitive yet.
Investigational Drugs and Potential Cures
hopeforfriend: I am close to someone who has had multiple sclerosis (MS) that has relapsed several times despite treatment. Her imaging suggests the disease is progressing. I have researched quite a bit and it seems that Lemtrada™ (alemtuzumab), while shot down by FDA, has some very compelling data, has been approved about everywhere else and is now being resubmitted to FDA. Could you please offer any insight into this treatment option? My friend has means to go abroad or Canada if the FDA won't approve it, and if her other options aren't viable. Do you have any thought on if or when you think this drug could get approved here or if not? What is your opinion on the drug's potential for MS and/or tough cases like my friend has.
Mary_Willis,_MD: For anyone who may not be quite as familiar with this medication, alemtuzumab has been approved for use in Europe and Canada. This medication targets CD52, a very specific marker on the immune cells that are involved in MS. Two large clinical trials showed impressive reductions in relapse rate and MRI activity—with just one course of medication per year. This effective medication did not receive U.S. FDA approval because of concerns about the design of the clinical trials. Specifically, there was worry about bias because patients and neurologists knew which medication was being given since one medicine is IV (intravenous) and the comparison was a more frequent injection. It would have been very difficult to blind this study because of the differences in the way the medication is given and typical side effects for each medication. Sanofi, the company that makes this medication, will appeal the decision. Many MS neurologists and MS groups have written to the FDA in support of alemtuzumab. This medication is not for everyone with MS, but it would help some people who do not respond to or cannot take other medications. Without knowing the specifics of your friend’s case, it is difficult for me to give advice on which medicine is the best for him or her. Anyone considering alternative ways of getting this medication should be aware that this medication does increase the risk for other autoimmune events like thyroid disease and thrombocytopenic purpura. People who receive this medication need to have regular thyroid, blood count liver, and kidney tests even for several years after receiving the last treatment.
lsp: Do you see a cure for multiple sclerosis (MS) in the near future?
Mary_Willis,_MD: I do have hope for an MS cure in the relatively near future. In order to cure or prevent something, we need to understand how it works. From my perspective, we are gaining momentum toward an answer to this question. Six MS medications were approved from 1993 to 2004. Three new medications have been approved since 2010 and I see two or three on the horizon in the next few years. Each one of these medications represents a substantial increase in our knowledge about how MS works. These are all important pieces of the puzzle. In addition, we are learning more about people with early MS through registries and research studies.
bcu: Do you have educational materials for registered nurses (RNs) to present to patients with multiple sclerosis (MS) for disease management?
Mary_Willis,_MD: Yes; we have a patient education binder that we now provide to patients who come to the Mellen Center for consultation or for a shared medical visit education session called "Taking Control of Your MS." The contents of this binder are available on the Cleveland Clinic Mellen Center website my.clevelandclinic.org/neurological_institute/mellen-center-multiple-sclerosis. I also recommend the websites of the National MS Society and the Multiple Sclerosis Association of America.
Moderator: I am sorry to say that our time with Dr. Mary Willis is now over. Thank you for sharing your expertise and time to answer questions today.
Mary_Willis,_MD: Thank you very much for your questions.
To make an appointment with Mary Willis, MD, or any of the other specialists in Cleveland Clinic’s Mellen Center, please call 216.444.8600 or toll-free at 800.223.2273 (extension 48600). Please visit us at clevelandclinic.org/mellen for more information.
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On Multiple Sclerosis
For a variety of topics related to MS, including FAQ (frequently asked questions), nutrition, depression, exercise, fatigue, bladder and bowel dysfunction, diagnosis, intimacy, impact of temperature variation, impaired cognition, living with MS, pain, talking to your teen, needle disposal, glossary and resources, please visit:
On Cleveland Clinic
As part of Cleveland Clinic’s Neurological Institute, the Mellen Center for Multiple Sclerosis offers state-of-the-art resources to provide the most advanced specialized care, supported by an extensive program of research and education. The Mellen Center is the largest and most comprehensive program for MS care and research worldwide, managing more than 20,000 patient visits every year. Basic and clinical research conducted at Cleveland Clinic sheds new light on MS every year.
MS is an incurable inflammatory disorder that affects the brain and spinal cord. Infection-fighting white blood cells enter the nervous system and strip off the myelin sheath that protects nerves. As a result, the nerves cannot conduct electricity as well as they should. In addition, the nerves can become severed, which prevents the brain from controlling the body as it normally would. Symptoms, which can be intermittent or progress over time, can include numbness, paralysis and loss of vision.
Whether you have a diagnosis or are worried about symptoms, know that MS doesn't have to control your life. Make an appointment with Dr. Willis today by contacting the Cleveland Clinic Neurological Institute at 216.636.5860 or toll-free 866.588.2264.
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