Multiple Sclerosis Symptom Management: Ask an Expert
Online Health Chat with Alex Rae-Grant, MD
April 12, 2011
Cleveland_Clinic_Host: Patients with MS may have a wide variety of symptoms. For example, numbness and tingling somewhere in the body, dizziness, fatigue, weakness, double vision, and unsteadiness may all be MS symptoms. Individuals may experience different symptoms at different times.
Fatigue is one of the most common symptoms of multiple sclerosis. It occurs in 75 percent to 95 percent of patients with MS. Fatigue can occur at all stages of the disease. The symptom is not related to the severity or to the duration of MS. At times, fatigue interferes with function and is an important symptom to manage.
Depression is also a very common symptom in people with MS. In fact, symptoms of depression severe enough to require medical intervention affect up to half of all people with MS at some point during their illness.
In the past, pain was not thought of as an MS symptom. While neurologists accepted numbness, tingling, itching, and other sensory symptoms as occurring in the MS patient, they often did not recognize pain as part of the spectrum of symptoms of MS. Over the past few years, physicians have recognized that pain is a key symptom. It can be a major cause of reduced function and decreased sense of well-being, and an important target for treatment. In some studies, up to one in four people with MS have ongoing pain that in some way affects their function.
In most cases, people with MS can function effectively in their daily lives. However, many people notice some kind of problem with their thinking at some time during the disease. Some notice problems with their memories, particularly finding words or remembering events from the past. Some find that they have trouble doing more than one thing at a time (multitasking), or that they take longer to process information. Some people find they have problems learning new tasks. All of these are symptoms of "impaired cognition," difficulties with the process of thinking. When measured carefully in research studies, most people with MS will have some measurable problem with cognition.
Dr. Alex Rae-Grant is board certified in neurology and specializes in the care of patients with multiple sclerosis. Dr. Rae-Grant earned his medical degree from McMaster University Faculty of Health Sciences in Hamilton, Ontario, Canada, and completed his neurology residency at the University of Western Ontario, London Health Sciences Centre, London, Ontario, Canada. He plays an active role at Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research, oversees education on multiple sclerosis in the northeastern Ohio region, assists with clinical trials, and is involved with resident and student education at the Clinic.
Cleveland_Clinic_Host: Welcome to our Online Health Chat with Dr. Alex Rae-Grant. We are thrilled to have him here today for this chat. Let’s begin with some of your questions.
kels1780: When are doctors able to determine what type of MS you have once you are diagnosed, i.e., RR, SPMS, etc.
Dr__Alex_Rae-Grant: The types of MS depend completely on the history, not on scans or exams.
- Relapsing MS = have episodes of worsening, may or may not recover fully, but stable between. relapses
- Secondary progressive MS = used to be relapsing, but now gradually worsening between relapses, may still have relapses but tend to be less often
- Primary progressive MS = never had relapses, just gradually progressing from onset of disease
fieldstonegrl: Is it common for an MS patient to have other autoimmune disorders?
Dr__Alex_Rae-Grant: It is not common, but we know now that it is more common than in the general population, i.e., that other immune conditions cluster with MS somewhat.
peg2635: Each specialist I see blames "their" findings on possible MS (i.e., neurologic bladder, delayed gastric emptying, optic nerve edema, tremors, dizziness, fatigue, etc.) BUT the neurologist says NO because I had two normal MRI's. Is this true? I'm scared with these symptoms all over that no one can figure out.
Dr__Alex_Rae-Grant: I can't do a diagnosis in this format. However in general, for the diagnosis of MS, we must see lesions on an MRI, either of the brain or spinal cord or both. If there is nothing on either, we definitely think of other diagnoses and investigate further. Higher strength magnet MRIs (for example a 3 tesla MRI) may show more brain lesions or cord lesions.
Esther54: How do I know if I have gone into SPMS? I'm having extreme fatigue. My arms and legs feel heavy.
Dr__Alex_Rae-Grant: Secondary progressive MS is defined as people who have relapses, but in between are gradually worsening, usually in walking. With MS, they may still have relapses, as long as one is stable in between relapses. Even if there are symptoms, this is still relapsing MS.
Wiggles: If you have lesions on your brain and some are in a classic place for MS and diagnosis is possible MS but symptoms are mild, is it OK to wait until another exacerbation or more lesions are found on MRI to treat with a DMD?
Dr__Alex_Rae-Grant: I can't advise an individual case, but we cannot predict what the next event will be. If there are well-defined, active new spots on MRI, we do recommend treatment, even if symptoms are mild. The whole idea is to prevent the next problem.
rasato: My sibling was recently diagnosed by an MRI performed by her family doctor. What would you suggest should be her next step? She has been seeing many specialist for her many symptoms but no one put it together until she went back to her family doctor. Is there one doctor/specialty that would be able to treat all of her problems?
Dr__Alex_Rae-Grant: A comprehensive MS center would usually evaluate and treat the various problems related to MS, but not necessarily all health problems. The National MS Society can tell you where there are MS centers in your area.
sister_has_ms: My sister was diagnosed with RRMS 8 to10 years ago, along with bipolar disorder, although her condition seems to be progressing rapidly. She has been in the hospital for 2½ weeks in a confused state. Could this be due to her just getting over a UTI? And will the confusion go away any time soon? Her MS doctor said it was from the MS and there's nothing that can be done! Is there something that can be done? We are not giving up hope, We just need some HELP! She has lost all bladder control. Right now she is on Copaxone® (glatiramer acetate) and four or five antidepressants. Are all these necessary? Copaxone® is no longer working. What’s her next step? What do you think about Tysabri® (natalizumab)? She also has tremors in both her hands and feet, and she hasn't been sleeping at all. This started around Christmas. She also doesn't want to eat unless it's ice cream, blizzards, cookies, etc., which has caused her to put on weight, which is not good as it will only make her walking and her balance worse. Could her lack of sleep be from fatigue? And how does 650 mg. of aspirin twice a day help fight fatigue? Thank you so much for taking time out of your busy schedule to answer my questions. PS: I'm just looking for answers and no one can seem to give me any.
Dr__Alex_Rae-Grant: We are not able to work on specific cases in this format. However, we do know that some MS patients worsen after an infection, possibly from immune activation.
If a standard injectable is not working for an individual, we assess the benefit of taking it, often checking the status of the MS on MRI, and consider switching to another injectable or trying natalizumab or fingolimod (Gilenya®) as our next treatment. Both have some risk of infection, particularly the 1 in a 1,000 risk for a brain infection with natalizumab.
Wiggles: If you are diagnosed with possible or probable MS, should you begin DMD (disease modifying drug)?
Dr__Alex_Rae-Grant: There is a new classification of MS in which if a person has a WELL-DEFINED relapse of MS (for example optic neuritis, or a definite spinal cord or brain stem syndrome) and there are some new enhancing spots on MR, as well older non-enhancing lesions, we can make the diagnosis of MS. (MCDONALD 2011 criteria). So with this we are making fewer probable MS diagnoses. If we see this, we think about disease-modifying therapy. However, if things aren't as clear and we are not sure, then following the patient over time, both clinically and with MRI, is very reasonable before committing to a long-term medicine.
peg: I was just diagnosed two weeks ago with MS. I had optic neuritis in January of this year. I have lesions on my brain. How can I be certain of an accurate diagnosis?
Dr__Alex_Rae-Grant: The MRI, at times, is very accurate in the diagnosis of MS, depending on the shape, size, and locations of spots. I use the term spots as it means the same thing as lesion but sounds better. So it depends on the MRI and the clinical story as to how sure we can be. Optic neuritis is strongly linked to MS, so if there are also well-defined spots that look like MS, this tends to be a pretty safe and accurate bet. However, many people will consider a second opinion before they embark on their treatment course. You have to be certain you are doing the right thing for yourself.
jfer: I was diagnosed by way of a spinal tap. Is this still the best way for diagnosis?
Dr__Alex_Rae-Grant: It aids in diagnosis, but there is no one best way to diagnose MS. Cerebrospinal fluid (CSF) can be negative, and you can still have MS. CSF can be positive and you may not have MS. There is no one diagnostic test even in this day and age.
Wiggles: Do you treat someone who is older and diagnosed with possible MS differently than a younger person diagnosed with possible MS? (55 compared to 25)? Female?
Dr__Alex_Rae-Grant: We really look at the activity on the MRI and the clinical activity of relapses. If these are active, we treat actively. If not, disease-modifying therapy may be less helpful. It's not just based on age. However, in general with older people, there is less 'inflammatory change' and so the medicines we have may be less useful. Having said that, we have treated people in their 60s with these medicines and, if indicated, clinically.
Wiggles: How long should someone be followed that has possible MS? And how often should they have an MRI?
Dr__Alex_Rae-Grant: There is not a standard format. If we have someone we are concerned about possibly having MS and don't have enough on the MRI to diagnose, we may follow annually, but it's not clear how long we should continue this.
sqscan: I have electrical sensations in my thoracic and lumbar areas of the spine, yet I'm scheduled to have a cervical MRI. Should this be changed?
Dr__Alex_Rae-Grant: There is a symptom called a Lhermitte's sign, which is an electrical feeling in the body with bending the neck. If this is the case, there are usually spots in the cervical spine. We will look at the thoracic spine if there are symptoms more like bands around the abdomen or a level of numbness around the belly button. The lumbar spine is outside of the central nervous system so we don’t look there unless we are looking for a disc protrusion or some other spinal issue.
fieldstonegrl: What is the correlation between lesions and symptoms? I had an MRI recently while having symptoms, but no active lesions were detected.
Dr__Alex_Rae-Grant: The correlation is weak, for many reasons. We don't use the MRI to tell what symptoms people will have or to relate to symptoms they have already had. Lack of correlation may be due to timing of the scan, location of the scan (if the symptomatic spot is in the spinal cord and we look at brain, for example), a small new spot, magnet strength, and perhaps some symptoms occur without new spots.
torikat32: I have had problems for six years now. MRI shows six lesions, nothing new, no enhancing lesions, just the same six every year. However, my physical health continues to deteriorate and the neurologist says we have to wait for new lesions to appear. Does everyone always get new lesions?
Dr__Alex_Rae-Grant: We tend to measure the clinical story and exam as one measure, and the MRI as another. So it depends on both measures. With worsening, we re-evaluate what we are doing and consider some other pathway for treatment.
swest15: I was diagnosed with MS about three years ago. The first episode occurred 15 years ago and it seems I get one episode every six to seven years (optic neuritis in 1996, right 6th nerve palsy in 2003). I tried taking Rebif® (interferon beta-1a) in 2003 but was ordered to stop it because of liver issues in 2004. I then was prescribed Copaxone®, but I kept getting site injection reactions, and I stopped taking it against my doctor’s advice. I feel the current MS medications on the market might cause more harm and speed up my disease progression. My question is this, are there any long-term studies, 5 to 10 years, that have followed MS patients to evaluate the effectiveness of MS treatments currently on the market? Most of the studies I've seen are 12 to 24 months, which is -- in my opinion -- not long enough to see what negative impacts taking some of these MS treatments might mean to the patient's health, and if no treatment was initiated on how their disease might have progressed. Thank you, AE
Dr__Alex_Rae-Grant: There are long-term un-blind studies following people on the initial treatment trials for a variety of medicines up to about 15 to 20 years. These are less clear in their findings, as there are no placebo patients to compare to (placebo patients often go on the medicines at the end of the one to two-year study). However, some trials suggest that patients who delay beginning medicines may not catch up to those who start medicines earlier, and we know that people can stay on interferon or the glatiramer acetate medicines for many years, as long as they tolerate them or do not develop antibodies.
sister_has_ms: How does 650 mg. of aspirin two times a day help with fatigue?
Dr__Alex_Rae-Grant: A randomized study at Mayo Clinic showed this dose helped with MS fatigue. Watch for stomach upset or ulcers with this. Other medications that have been used also off label include amantadine (Symmetrel®) and modafinil (Provigil®).
jfer: I am currently using Ampyra® (dalfampridine). Will this help with coordination?
Dr__Alex_Rae-Grant: The data on dalfampridine showed it sped up walking in about 30 percent of treated patients. There were no definitive data on coordination in the trials that the FDA used for approval, so we really just use it for slowed walking. Could it help with other nerve functions? It could but we were not able to show as much of an effect on other measures, such as vision and eye movement.
kels1780: Are shaky hands associated with MS or with Copaxone®?
Dr__Alex_Rae-Grant: Some people with MS develop tremor in various body parts. Tremor is not a common side effect of glatiramer acetate, but any medicine can have a particular side effect in an individual. I personally have not seen tremor with glatiramer acetate.
jfer: Is there evidence that Gilenya® helps to reduce the amount of scarring on the MRI?
Dr__Alex_Rae-Grant: Fingolimod has been shown in a variety of studies to significantly reduce new MRI lesions. It doesn't take away well-established spots of MS, but reduces new spot formation.
concernedstepmom: Is there a special time of the day when it is better to take your medication?
Dr__Alex_Rae-Grant: It depends on the medicine. For the injectables, there is no special time, but many people take an interferon at night to try to sleep through the flu like symptoms. It is less of an issue for glatiramer and fingolimod.
SEAB: How does Ampyra® work?
Dr__Alex_Rae-Grant: Dalfampridine has its effect on potassium channels in the nerves. By altering these, it improves conduction of electricity in demyelinated fibers and may improve symptoms. It does not have an effect on the immune system and has no long-term effect. In a slow release form (Ampyra®) lasts about 12 hours, so every 12 hour dosing is how it is used.
jfer: Is the use of Gilenya® strictly at 24-hour intervals, I know it is once per day, but how should it be timed?
Dr__Alex_Rae-Grant: About once a day is OK. It doesn't have to be rigid in timing, as it has a long-term effect over weeks that is maintained by daily dosing. It is best to keep the dose the same time each day to avoid forgetting whether the dose was taken.
sqscan: Regarding the oral medication, can a person who is newly diagnosed try this first before injections?
Dr__Alex_Rae-Grant: In general, we recommend fingolimod after a trial of standard medicines. Some insurers are not paying for this medicine unless others are tried first, but it varies.
Grandma_B: I suffer with chronic pain due to my MS. What is/are the latest medicine(s) being given to control chronic pain?
Dr__Alex_Rae-Grant: There is not enough research into pain related to MS, and we hope there is more in the future. We tend to work with pain management doctors who understands central nervous system pain. This pain is like having the cable in your TV partially unplugged so the brain has to interpret a poor signal, and it interprets the sensation as pain. The medicines we use alter this signal in some way. We tend to use medicines like gabapentin (Neurontin), carbamazepine (Tegretol), and some of the antidepressants that are active on pain. Some pain doctors will use treatments such as injections or infusions of medicines such as lidocaine in a subset of patients. Regular exercise and stretching are also helpful.
Tippy: How can a person with MS determine if they have pain from MS or from another ailment, for example, lower lumber pain?
Dr__Alex_Rae-Grant: Low back pain is one of the most common general medical symptoms. If someone with MS has this, we tend to treat it like everyone else. If there is burning, tingling, band-like sensation, electrical sensations, or weakness, we think more about MS pain. Of course one can have a disc herniation to cause pain down a leg or in the back, and sometimes we have to look for something like this causing back pain.
sqscan: I'm scheduled to have an MRI of my head, but I've been having spine pain (between my shoulder blades and the base of my spine). Can lesions also form in the spine? Would a head and spine MRI be beneficial?
Dr__Alex_Rae-Grant: With MS, there can be spinal cord spots just like there are brain spots. This is very helpful diagnostically, but not as useful in following MS. So it depends on whether the testing is for diagnosis or for follow-up management. The MRI we do on the spinal cord is a cervical and a thoracic MRI.
sspa: What treatments are available for cognitive problems? Memory loss? Fatigue? I realize that sleep and exercise play a role in managing fatigue. Besides finding the right prescriptions, are there other treatments? What vitamins are best for these symptoms? Are there other treatments to manage the memory loss?
Dr__Alex_Rae-Grant: For memory, there are a number of issues. Memory may be impaired by poor sleep, by depression, by medications, or even by fatigue. Attention to these issues is important.
A percentage of MS patients have actual cognitive issues, such as slow speed of processing, recent memory changes, and sometimes executive function, such as decision making. There are no FDA-approved medicines for this, but we may try some of the medicines used in Alzheimer’s disease off label, as there are small studies suggesting these are helpful. Also having lists and reminders is very useful.
jsqr: What's your opinion on using Aricept® (donepezil) for cognitive problems? Do you think it encourages neuroplasticity? Or are the results purely psychosomatic?
Dr__Alex_Rae-Grant: We don't have any direct evidence of Donepezil's effect on neuroplasticity in MS patients. There are studies showing some improvements on scales of cognition, as well as on a global impression scale. Side effects include abdominal cramping and diarrhea.
sister_has_ms: Can fatigue cause confusion? Can sleeping cause confusion?
Dr__Alex_Rae-Grant: Yes and yes. Good sleep is very important.
sspa: If we have jobs that require a lot of multi-tasking, slow cognitive issues are slowing me down. Making decisions and answering questions at work are more difficult. My responses are slow. Can this be permanent?
Dr__Alex_Rae-Grant: There is good experimental data that people with MS use more areas of the brain for multitasking, so they have to work harder. They really do not do well with this, and we encourage doing one task at a time and reducing the other stuff; e.g., blackberry, TV, cell phone, etc. they are doing at the same time.
books4bert: I've had MS for 26 years. My question is about incontinence. How bad does it have to get before I need to use a catheter? It severely limits me now, and I take 8 mg. of Toviaz® (fesoterodine fumarate) and use a heavy pad. I get up twice at night. The urologist doesn't think it is bad enough yet.
Dr__Alex_Rae-Grant: Tough question. In part it depends on how the bladder is working. If after voiding there is still a significant amount of urine retained, and it's not due to active infection, then intermittent catheterization may be very helpful. We will do a bladder scan after voiding to try to get some sense of this.
sister_has_ms: Can anything be done for my sister’s loss of bladder control or is this irreversible?
Dr__Alex_Rae-Grant: We work with urologists who specialize in nerve control of the bladder. There are a variety of things that can be done, but it requires investigation and a specialist with an interest and knowledge of this area.
sister_has_ms: Does the Mellen Center have these kinds of specialist to work in getting bladder control back?
Dr__Alex_Rae-Grant: We work with urologists at the Cleveland Clinic. They are not housed in the Mellen Center but have worked with us on many cases.
kels1780: What do you feel are the risks to family members of getting MS if an immediate family member was just diagnosed?
Dr__Alex_Rae-Grant: The best data is from Canadian studies. These show that first degree relatives of a person with MS (siblings, parents, children) have about a 3 percent to 5 percent chance of MS over a lifetime, which is an increase over normal population risk. If there is an identical twin, the risk of the other twin getting it is about 30 percent. So there is some genetic component, but this is not a strong genetic link and may relate to what are known as susceptibility genes, which allow certain immune diseases to occur.
kels1780: Are there any genetic tests that are available for family members of someone who is diagnosed with MS?
Dr__Alex_Rae-Grant: At present no. We are not doing predictive testing, as the risk is relatively low. If they have symptoms, we evaluate them on their own symptoms.
Wiggles: If siblings are diagnosed as CIS (clinically isolated syndrome) and possible MS, is there any value of having them evaluated by the same neurologist?
Dr__Alex_Rae-Grant: It's at least good for us to know what is going on with the sibling, although the course and response to treatment may be different, even in siblings with MS.
Vitamins and Supplements
kels1780: Is vitamin D used to increase prevention and not for management? There are a lot of statements about vitamin D and MS. I am curious what your thoughts are on the topic?
Dr__Alex_Rae-Grant: The vitamin D in MS story is still developing, but there is a lot of epidemiological evidence (i.e., from populations, not from clinical trials) suggesting that higher vitamin D is associated with lower risk of MS and perhaps lesser progression of MS. There have been animal models of MS where vitamin D reduces MS activity. We don't yet know if vitamin D is preventive, but it makes sense at least to try to have a vitamin D level in the middle of the normal range. In northern Ohio, home of Cleveland Clinic, about 90 percent of the population is vitamin D deficient, so we tend to just go ahead and replace it. The dose is unclear and recommendations vary.
jfer: I have read where people are taking massive doses of vitamin D. Isn't that dangerous?
Dr__Alex_Rae-Grant: Excess vitamin D can have some risk of toxicity. According to physicians involved in vitamin D metabolism, safe doses are from 2000 to 4000 units per day of vitamin D3, which is not a massive dose. We are often dosing at this range for a few months then checking levels to see if we have achieved a mid-normal range result. Again we are not sure about vitamin D in MS, but it looks safe, reasonable, and possibly important.
jfer: What would be a safe level of Vitamin D?
Dr__Alex_Rae-Grant: Mid- to high-normal for your lab.
jfer: What about Vitamin B 12?
Dr__Alex_Rae-Grant: We usually check B12 when we first evaluate people to make sure it's normal. If low, we treat actively and recheck.
fieldstonegrl: What supplements are good for MS patients? I'm taking vitamin D, and just started a B vitamin and fish oil. Are these or other supplements typically helpful for MS patients?
Dr__Alex_Rae-Grant: The only one we are specifically recommending is vitamin D. There was some work on fish oil, but this was limited, with no definite answer. Some people take B vitamins but we have no data. No other supplements are specifically recommended.
sqscan: Please tell us about the new oral medication and is it promising?
Dr__Alex_Rae-Grant: There is a new oral medicine, fingolimod (brand name Gilenya®), that is FDA-approved for relapsing MS. This is now available. It is effective in reducing relapses and reducing MRI activity, as well as slowing progression. There are some preliminary monitoring tests that have to be done, such as blood work, eye exam, and EKG, and there is some risk of infection, swelling behind the eye, and slowing of heart rate with first dose. We usually think of this medicine if more standard medicines are not enough or are not tolerated. There are other oral agents in the pipeline including laquinimod and BG12, which you will likely hear about in the next year or so.
teecee: Anything "new" for treating SPMS?
Dr__Alex_Rae-Grant: If there continues to be relapses, SPMS has been treated in research studies with interferon beta 1b, or natalizumab. There is research on a new medicine called Campath (alemtuzumab), which is effective but not FDA approved. Also, there are studies using pulse steroids that consist of repeated treatments of IV steroids for three days in a row every two to three months. There are some trials in SPMS that are underway. A good place to look is www.clinicaltrials.gov and you can put in MS as a search term.
JMW: Is there a new oral medicine that can be taken with Avonex® (interferon beta-1a)?
Dr__Alex_Rae-Grant: In general, because of the negative experience of combining medicines from using natalizumab and interferon beta-1a together, we tend not to put together medicines. So the oral agents are stand-alone medicines. A group in Calgary, Alberta, has studied an antibiotic minocycline off label in combination with some standard agents and found it has some effect. This is an oral agent. We don't tend to use this at present much. There are also a few trials adding newer oral agents to older injectables, but no results are available yet.
cimmerayn: CCSVI (chronic cerebrospinal venous insufficiency) has become a huge topic among MS patients. As someone who has had the venoplasty procedure done and had fantastic results in terms of symptom relief (i.e., no more fatigue, brain fog, no more spasms, improved balance/gait), do you feel that CCSVI could possibly change the way neurologists will think about the causes and/or treatments for MS? Thanks.
Dr__Alex_Rae-Grant: CCSVI is still under intense investigation at multiple centers and is not yet established as a treatment for MS symptoms. I would expect after the preliminary studies are done, there will be some kind of blinded research study of treatment, but this is in the future. The problem with stories such as yours is that we cannot depend on them to tell us that the intervention is working or whether there is a 'placebo effect,' and we need to examine this effect in a more scientific way. I think this is a field to watch carefully.
jfer: I am currently on Gilenya® and have no idea if it is working. Is CCSVI a good treatment program? When I say recently on Gilenya®, I mean within the last week. I was diagnosed some 20 years ago, started on Avonex® then was switched to Copaxone®, I just want to make it better. I have a lousy memory, especially short term. My long-term memory seems to be fine.
Dr__Alex_Rae-Grant: Fingolimod is a strong medicine and we encourage people to try this for a few months before making any decisions. Remember, all the medicines we have are not designed to make you feel better, but we hope they will reduce future activity. It's like taking blood pressure medicine, it doesn't make you feel better, but prevents heart attacks.
We are not recommending CCSVI treatment. There have been deaths or operations related to such treatments, and we are conservative until there is more evidence.
jfer: So, is CCSVI a good thing to have my neurologist look into for me?
Dr__Alex_Rae-Grant: We are not looking into it outside of a research study at the present, as we do not know what to do with this. Sorry, but we still need more information. There are some presentations on CCSVI at the academy of neurology this week so it may hit the news media.
Vinette: We are getting many questions about CCSVI, What is your opinion?
Dr__Alex_Rae-Grant: As noted in other answers.
JMW: Can MS patients successfully have joint replacement surgery?
Dr__Alex_Rae-Grant: There is no specific contraindication to surgery in MS patients. The best evidence we have is that the surgery does not significantly affect MS course.
usa54al: What type of exercise is best for someone with MS?
Dr__Alex_Rae-Grant: There are lots of data on exercise, showing it is good for people with MS. We recommend a combination of resistance (some kind of weights for example) and aerobic (that gets the heart rate to a moderate level). It is useful to work with a trainer if possible to suggest a program. Even walking is good exercise. Frequency should be three times a week and work up to 40 minutes per day. Less than this and there doesn’t seem to be a build-up of effect.
fieldstonegrl: Does smoking make MS worse?
Dr__Alex_Rae-Grant: There is some data from the NARCOMS (North American Research Committee on Multiple Sclerosis) registry that people who smoke have more progressive MS and more rapid worsening. We strongly encourage people to quit.
JMW: Any nutritional suggestions?
Dr__Alex_Rae-Grant: Data on nutrition is weak and mixed. We recommend a heart healthy diet that is low in red meat and carbohydrates, high in vegetables and salad, fish, olive oil, etc. Older nutrition studies have major design flaws that limit their information value.
kels1780: Are heat rashes that cause itching associated with MS?
Dr__Alex_Rae-Grant: Rashes are not caused by MS directly, but of course, medicines for MS can cause rashes. Some people with MS had spots of itchiness without rash, and this can be an MS symptom. (known as focal pruritus).
kels1780: What is the connection between psoriasis and MS, if there is one?
Dr__Alex_Rae-Grant: There is no known connection. The only developing thing is that BG12 is being studied in MS and is also being studied in psoriasis.
Esther54: Any recommendations for someone who is trying to lose weight but has difficulty because of extreme fatigue?
Dr__Alex_Rae-Grant: It's a difficult problem. As people become less mobile, they can't work off as many calories but tend to have the same appetite. Portion control helps. Avoid sodas as they have many calories. No snacking. Eat more protein and less fat and carbohydrates. One could also meet with a dietitian. Hope these are helpful.
sqscan: Does the Mellen Center offer an "Ask the Experts" night for those with MS?
Dr__Alex_Rae-Grant: Good idea. Not presently. Something to consider.
sister_has_ms: My sister just isn’t sleeping. Any advice?
Dr__Alex_Rae-Grant: Depends on a lot of things. Ideas for sleep:
- Turn the alarm clock around so you can't see what time it is
- Do not watch TV in bed
- Limit coffee and caffeinated soda intake
- Try a sound generator for waves or white noise
- Drunk herbal tea
- Do not exercise before bed
We don't try sleep medicines as people often get stuck on these. We sometimes use trazadone (Desyrel) off label, which seems to help with sleep and is not very addictive. However, it does have some side effect potential. Also, we review medicines as some disrupt sleep. Consider a sleep medicine evaluation.
jferroni: Dr. Rae-Grant, thank you for your time, it has been very valuable.
Dr__Alex_Rae-Grant: My pleasure.
Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Alex Rae-Grant is now over. Thank you again Dr. Rae-Grant for taking the time to answer our questions about Multiple Sclerosis Symptom Management.
Dr__Alex_Rae-Grant: That's all folks! Great questions!
Dr__Alex_Rae-Grant: You are very welcome.
To make an appointment with Alex Rae-Grant, MD, or any of the specialists in that Mellen Center at Cleveland Clinic, please call 216.636.5860 or call toll-free at 866.588.2264. You can also visit us online at www.clevelandclinic.org/mellen.
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This chat occurred on April 11, 2011
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