Living Well with Multiple Sclerosis
March 12, 2013
Multiple sclerosis (MS) is thought to be an autoimmune disease in which the body's own immune system mistakenly attacks normal tissues of the body. In MS, these attacks are aimed at the fatty covering called myelin covering nerves in the Central Nervous System (CNS).
Throughout the month of March, Cleveland Clinic is celebrating National Multiple Sclerosis Education and Awareness Month. If you or someone you love has been diagnosed with multiple sclerosis (MS), finding the right medication is only part of treating the disease. Exercise and a healthy diet can help ease your symptoms while helping you achieve a healthier and active lifestyle.
Maintaining a regular exercise program is one of the smartest things you can do for your MS. Exercise has been shown to help with fatigue and a sense of well being, as well as increasing physical capacity in people with MS. In those with MS, there is no special restriction in what you can and cannot do. However, you may find that after exerting yourself you may feel it more than you had anticipated. It is important to know that exercise will not worsen your condition.
In addition to exercise, we recommend a heart-healthy diet—one that includes low amounts of red meat, lots of fruit and vegetables, and fewer carbohydrates and fatty foods. Extra weight negatively affects balance and strength, increasing the risk of falling in those with MS. Extra weight may also worsen in patients with high blood pressure and diabetes.
While there are many aspects of MS that cannot be easily controlled, diet and exercise are two ways in which you can help take control of your disease. Having MS is a lifelong journey requiring the ability to create balance and to ask for support.
For More Information
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.
The Mellen Center for Multiple Sclerosis Treatment and Research is committed to moving beyond the challenges of multiple sclerosis; we are dedicated to achieving the utmost quality of care for individuals affected by multiple sclerosis (MS), no matter what the obstacles.
At Cleveland Clinic’s Mellen Center, we address factors on wellness including:
- Avoiding behaviors that have a negative impact on health
- Having a health maintenance management plan
- Following a diet that promotes health
- Engaging in activities that promote health
- Performing other activities that improve wellness and wellbeing
- Exploring complementary and alternative medicine strategies
The departments of neurology and neurosurgery at Cleveland Clinic are ranked in the top five hospitals nationally and first in Ohio by U.S.News &World Report 2012-2013.
For more information on the Mellen Center and multiple sclerosis, please visit: http://my.clevelandclinic.org/multiple_sclerosis_center/default.aspx
On Your Health
MyChart®: Your Personal Health Connection, is a secure, online health management tool that connects Cleveland Clinic patients with their personalized health information. All you need is access to a computer. For more information about MyChart®, call toll-free at 866.915.3383 or send an email to: firstname.lastname@example.org
A remote second opinion may also be requested from Cleveland Clinic through the secure Cleveland Clinic MyConsult® website. To request a remote second opinion, visit eclevelandclinic.org/myConsult
To make an appointment with Mary Rensel, MD, or any of the other specialists in Cleveland Clinic’s Mellen Center, please call 216.444.8600, toll-free at 800.223.2273 (extension 48600) or visit us at clevelandclinic.org/mellen for more information.
About the Speakers
Mary R. Rensel, MD, is a Staff Neurologist in Neuroimmunology who treats adults, children and adolescents at Cleveland Clinic's Mellen Center for Multiple Sclerosis Treatment and Research. Dr. Rensel completed her fellowship in neuroimmunology, residency in adult neurology, and internship in internal medicine at Cleveland Clinic after graduating from medical school at Medical College of Ohio at Toledo, in Toledo, Oh. She is board certified in neurology.
Dr. Rensel has served on the National Multiple Sclerosis Society Pediatric MS Advisory Board since 2004. In 2001, she was a participant on the Bureau for Children with Medical Handicaps. Dr. Rensel received the Clinical Neurology Award from the Medical College of Ohio in 1992.
Her specialty interests including adult multiple sclerosis, pediatric multiple sclerosis and wellness for MS patients.
Let’s Chat About Living Well with Multiple Sclerosis
Joseph_Nally,_MD: Welcome to our web chat on kidney disease. My name is Dr. Joe Nally and I am a nephrologist (or kidney specialist). I am the director of Cleveland Clinic’s Center for Chronic Kidney Disease. I am happy to do this web chat on the eve of World Kidney Day 2013, which is March 14th. This is the eighth annual World Kidney Day, and the overall theme is to recognize that kidney diseases are common and harmful, yet treatable.
Multiple Sclerosis Diagnosis: MRI, Relapse and Second Opinions
Canada: I am very scared to go in an MRI machine. Do they put someone under for this procedure? Can multiple sclerosis (MS) be diagnosed without an MRI?
Mary_Rensel,_MD: There are some new MRIs that are quicker than in the past. There are also some medications and stress management techniques that can help a person get through a MRI test. Some folks can actually fall asleep during an MRI while others have a hard time. Usually you can find something that helps you get through an MRI. An MRI is the most sensitive way to diagnose multiple sclerosis.
Canada: What is the usual way that MS is diagnosed?
Mary_Rensel,_MD: Brain MRI is the most sensitive or most common way to diagnose MS. Sometimes a patient needs to have an MRI of the spinal cord, visual evoked potential or spinal fluid exam.
lkay54: Should patients get a second opinion of their multiple sclerosis diagnosis before starting treatment? I have heard of some diagnoses being taken back.
Mary_Rensel,_MD: We offer second opinions. We see a wide range of situations. There have been times that I have not agreed that it is multiple sclerosis and have stopped the medications.
lkay54: How can I have new symptoms with multiple sclerosis, but MRI scans don't show new lesions?
Mary_Rensel,_MD: Yes, this can be frustrating, but the fact is that the MRI has its limitations. If the lesions is in the spinal cord and a patient has a brain MRI, the problem spot will not be seen unless the cord is examined.
Silly: Can you please describe what a relapse is?
Mary_Rensel,_MD: A relapse is new symptoms of multiple sclerosis that last at least a day or two, and would produce a noticeable difference that would be noted by your physician’s examination. For instance, if you have a weak hand, we would be able to see a change from the last time you came in.
LucyRsl2: How often are MRIs repeated in someone who doesn’t experience flare ups?
Mary_Rensel,_MD: Again, there is no set time, but in the first few years of a new medication, I typically check an MRI annually.
Multiple Sclerosis Incidence in Ohio
marielen: I have heard that the rate of multiple sclerosis in northeastern Ohio is higher than in other areas. Is this true?
Mary_Rensel,_MD: Yes, this latitude on the globe and the region around the Great Lakes has a high rate of multiple sclerosis (MS). This may be related to the amount of sun exposure of the area. We are not sure what else links this region to MS.
Medications for Multiple Sclerosis
marielen: I am a male with multiple sclerosis (MS) and Crohn disease. What are my best treatment options?
Mary_Rensel,_MD: Tysabri® (natalizumab ) is an intravenous (IV) medication that helps to treat both MS and Crohn disease. This may be an option for you.
jime: My 57-year-old sister was diagnosed with multiple sclerosis three years ago from an MRI and has serious complications; including trigeminal neuralgia, severe bowel fecal incontinence, and emotional issues of anxiety and depression. She is being treated with debilitating high doses of Trileptal® (oxcarbazepine) and with laxatives that are causing violent diarrhea. She is closely considering a peripheral nerve stimulator (PNS) for the trigeminal neuralgia (TN). Have you any knowledge or experience using PNS for multiple sclerosis patients with TN? She is struggling to just get by day to day. Could you or a physician at Cleveland Clinic’s Mellen Center see her on short notice? How could we accomplish this? She has little quality of life and does not know where to turn—especially if the PNS does not work, something to help her lower the Trileptal® dose.
Mary_Rensel,_MD: We are glad to evaluate patients with MS, so feel free to call for an appointment at (216) 444-8600, to schedule a new patient consult. We can help with the diagnosis or with symptom management, like your sister needs. We tend to keep appointments open within days, so she should be able to get in soon.
Exercise for Multiple Sclerosis
LarryH: Just walking to get my mail, getting dressed, taking a shower and similar tasks require me to sit down and rest. Can you suggest an exercise program for those of us who can walk, but tire quickly?
Mary_Rensel,_MD: It can be quite helpful to work with a physical therapist to start a daily exercise program to help complete those daily tasks.
Haichman: Would a personal trainer be appropriate? I have found that physical therapists hand out diagrams instead of working with the patient.
Mary_Rensel,_MD: I have heard MS patients have good experiences with either a physical therapist or a personal trainer. It may be helpful to call around to some local physical therapy centers to find one that is familiar with MS. If the physical therapist is familiar with MS symptoms and fatigue, they can be more helpful to you in the long run.
#1Teacher: Are water exercise a good exercise for someone with multiple sclerosis?
Mary_Rensel,_MD: Multiple sclerosis patients enjoy water exercises or aquatherapy for their symptoms. Just make sure the water is not an arthritis pool that they keep really hot. A cooler pool would be optimal.
LaVette: For some reason, my legs feel heavy after I get out of the pool, any thoughts?
Mary_Rensel,_MD: Sometimes the leg heaviness is due to the temperature of the water. You want to keep the temp around 85° Fahrenheit. It could also be that you are fatigued after a workout in the water. Just pace yourself.
LucyRsl2: What exercise do you most recommend for balance improvement? Would Tai Chi help?
Mary_Rensel,_MD: Yes, Tai Chi can be helpful. So can working with physical therapy to strengthen the core muscles as well as other exercises like yoga and Pilates. These exercises also help to strengthen the core abdomen and back muscles.
Behavioral and Cognitive Issues
pgmrjab: I have no motivation to do anything. Is this a cognitive issue?
Mary_Rensel,_MD: Motivation can be cognitive. It can also be due to a low mood, so you may want to ask a psychologist to look into this.
born2fish: Is there a psychologist that specializes in multiple sclerosis at the Mellon Center?
Mary_Rensel,_MD: Yes, Dr. Amy Sullivan and her team. Please call (216) 444-8600 to schedule an appointment with her.
born2fish: Do you have any suggestions on how to cope with the mental aspects of multiple sclerosis, such as depression, confused thoughts, and starting tasks but not finishing them, without taking more medications?
Mary_Rensel,_MD: There are cognitive therapist who can help with these symptoms. Please call (216) 444-8600 to schedule an appointment with a cognitive therapist. A psychologist can also help. Please call the same number to schedule an appointment.
Diet and Supplements for Multiple Sclerosis
skyline: What are the top three to five things that multiple sclerosis (MS) patients should consume (i.e., food and vitamins)—or not consume—to maintain or improve how MS impacts us? I hear that diets that are high in fish and low in saturated fat are very beneficial. Is this true?
Mary_Rensel,_MD: Yes, I agree. Fish is quite helpful—especially oily fish like tuna and salmon. Colorful fruits and vegetables are also helpful. Avoiding the saturated and trans fats is important Adding more Omega 3 and 6 oils like olive oil and flax seeds can also be helpful. Follow an anti-inflammatory diet overall.
LaVette: What vitamins are good for a person diagnosed with MS?
Mary_Rensel,_MD: A general multivitamin, vitamin D and otherwise eating a healthy colorful diet full of vegetables and fruits are recommended. There is no need for immune boosters, like garlic tabs or echinacea. You should avoid these.
pascal: Is it safe to take herbal supplements, like milk thistle, hawthorn berry, evening primrose and fish oil?
Mary_Rensel,_MD: There are no studies that have been done with all of these supplements. There was a recent study of fish oil in multiple sclerosis patients that showed it did not help in a significant way. So, there is no need to add oils if you are eating tuna a few times a week.
Kwente01: I have not fully been diagnosed with multiple sclerosis yet, but have had signs of multiple sclerosis. Could you tell me how diet is important? Also, what kinds of herbs are good for multiple sclerosis patients?
Mary_Rensel,_MD: Again, a healthy diet is important. There is one called the anti-inflammatory diet. It is mainly vegetables, fruits—foods with lots of colors, and avoiding processed foods, i.e. no boxes or bags of foods. Eat the real thing, such as broccoli, potatoes, etc., and no pre-processed foods. You can find further information on the National Multiple Sclerosis Society web site and Cleveland Clinic Wellness web site.
missengle: I'm seeing news about salty diets and MS. I don't eat a lot of fast food or processed food, but I do always salt my food at home. What are things to look out for?
Mary_Rensel,_MD: You are right. A new study came out looking at a high salt diet as a cause of multiple sclerosis. The thought is that a high salt diet changed the T cells (a type of white blood cell that is involved in multiple sclerosis). It is only one study, and it will need to be confirmed with other studies before we know if it is real cause.
sqscan: I was diagnosed with multiple sclerosis (MS) and have been on Copaxone® (glatiramer acetate) for two years. I tried to get into a study for relapse-remitting multiple sclerosis (RRMS), but my doctor won't write a letter stating that I now have clinically isolated syndrome (CIS). (I have one old lesion and have had a full-blown incident seven years ago, with on-and-off symptoms over the years since). Should I still be on the Copaxone ® since I might not truly have MS? I'm so confused.
Mary_Rensel,_MD: The term CIS is not used as much lately. The diagnosis of multiple sclerosis refers to the lesion pattern on the MRI and symptoms felt by the patient. There are many studies that confirm treatment with MS medications can be helpful in the long term— as long as the diagnosis is confirmed. The doctor that is conducting a clinical study usually reviews past records to assure that you do indeed have MS, so you may want to start there or have a second opinion.
Mellen Center Services
cjwfox35: I do not live near Cleveland and I really like my new neurologist, but is there a way that I can access some of your other program services without being a patient there?
Mary_Rensel,_MD: You may want to visit patient education on Cleveland Clinic’s Mellen Center website. We also do one time consultations with the neurologist and physical therapist or occupational therapist. If you call ahead, we could try to coordinate visits, so you can accomplish a lot in one visit.
Canada: What is the cost of a new patient consult?
Mary_Rensel,_MD: It depends on the length of the consultation and your insurance coverage. Please call (216) 444-8600 or (800) 223-2273 for an appointment. If you still have questions, then we have financial counselors who can help as well.
Moderator: Thanks to all for joining us on this chat. We’re so sorry we could not answer all of the questions. Have a great day.
Mary_Rensel,_MD: Thank you all for joining me today. We hope to see you at Cleveland Clinic’s Mellen Center or during another chat.
Moderator: I'm sorry to say that our time with Cleveland Clinic expert Mary R. Rensel, MD is now over. Thank you Dr. Rensel for taking your time to answer our questions today.
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