Expert Support
Q & A archive
In this section, members will find Dr. MacLean’s answers to your questions from previous months.
Please click on a question below to reveal the answer.
1) I get very anxious right before I self-inject my disease-modifying therapy. Is there anything I can do to reduce the anxiety?
Injection anxiety, also called “needle phobia”, is common both in patients with MS as in other conditions like diabetes that require frequent injectable medications. It can range from mild anxiety to severe panic reactions and can sometimes be the cause of discontinuing therapy. The good news is that anxiety related to injections can be reduced. If you are a member of an MS clinic, often a call to the clinic nurse for advice and counselling is helpful. Also, there are special therapeutics nurses available through the pharmaceutical companies that market the injectable disease-modifying therapies who can be contacted for advice. Often they will advise the following: prepare for your injections in a comfortable, quiet location; use deep breathing exercises and focus on your inhalation and exhalation to quiet the mind; and use meditative relaxation techniques such as head-to-toe (or toe-to-head) muscle relaxation. Some patients have contacted a counsellor/therapist to teach them techniques on how to challenge any negative thought patterns or cognitive distortions that may have developed over time in association with injections. Other patients benefit merely from switching to an autoinjector, or getting a loved one to perform their injections for them.
2) I am seeing a correactologist for my MS. It's a new alternative way to treat ailments. Is this safe for someone with relapsing-remitting MS?
Admittedly, this is the first time I have heard of this form of alternative medicine and had to investigate it a bit before answering! From what I understand, this is a non-invasive technique that uses soft manual pressure on various points of the body and some passive movements of the feet while the patient is lying comfortably on a table. While research in alternative medical techniques is often lacking, many patients have found subjective symptom improvements from alternative techniques such as acupuncture, acupressure, massage, therapeutic touch, etc. These particular techniques also have the benefit of being non-invasive (except for perhaps the very tiny needles used in acupuncture, which are generally well tolerated) and quite safe. While I am not familiar with this particular type of treatment, correactology sounds to me to be a rather safe technique and unlikely to have a negative effect on your MS.
3) I have experienced two episodes of slight numbness and slurred speech for several days over the last 12 months that coincided with stressful times in my life. My neurologist said I have definite MS based on my MRIs and my two clinical episodes. Can a clinical episode be caused by anxiety? My neurologist wants me to start treatment for MS right away, but I am nervous to do so. My MRI last June was not suggestive of MS despite a few hyper-intense lesions, and my follow-up MRI showed no significant changes. I don’t want to start therapy yet because I’m not convinced I have MS. What do you think?
The relationship between stress and MS relapses is unclear. There is little objective evidence to support a strong correlation between the two. That being said, patients will often recall MS attacks occurring at otherwise stressful times in their lives. Whether this supports a true relationship between stress and MS relapses or whether this phenomenon is because the baseline level of stress the patient has makes those attacks more memorable is difficult to say. In cases where you are uncomfortable with your doctor’s diagnosis and/or advice, it is often in your best interest to obtain a second opinion. Your family doctor can likely suggest another neurologist for this.
4) I would like to know if having Leukemia could make my MS worse.
It is not expected that leukemia would worsen your course of MS. In fact, there is a chance that chemotherapy or bone marrow transplantation used to treat leukemia might actually have a beneficial effect on your MS.
5) Is shallow breathing or a weaker voice a symptom of more progressive MS? Is there anything I can do to strengthen my breathing so that it doesn't get worse? Is breathing assistance common in progressive MS?
Breathing problems are an unusual symptom in MS. Only in those with very advanced MS who have severe weakness of both arms and legs, usually have some weakness of the muscles for breathing. Those who do have trouble breathing note that their voice is weaker and they cannot speak in long sentences. The need for breathing assistance is extraordinarily rare. You might ask to see a respirologist to have your breathing assessed and they can make appropriate recommendations.
6) I have MS and cervical arthrosis. My MRI revealed MS lesions in my cervical spine. I would like to know if lesions in my cervical spine can make symptoms in my lower and upper limbs progress more quickly.
Cervical arthrosis is a very common finding on MRI scans of the cervical spine and consists of age-related, degenerative changes of the bones and joints of the spine. Your neurologist would have to determine whether or not the arthrosis is causing any actual neurological problems or if it is just an incidental finding.
Trying to predict the future with MS and how quickly someone will progress is difficult. Neurologists who specialize in MS have learned not to place too much emphasis on MRI results. We are often surprised how well some people do even when their MRI looks concerning, and conversely, how poorly others can do even with relatively little visible plaque. Generally speaking, however, MS plaques in the spine are more likely to cause symptoms and be more problematic than an equally sized plaque in the brain just because the spinal cord is a thin structure with a lot of important pathways packed tightly together in a small space. And yes, in the case of the cervical spine, the functions that would be affected include those of both arms and legs. The brain, conversely, has a lot of "silent" areas, so plaques are more likely to be asymptomatic there. That being said, just because you can see a demyelinating plaque on MRI doesn't necessarily mean it will cause symptoms. Sometimes the electrical signals can travel through a demyelinated plaque quite nicely. And just because a plaque is present and visible does not necessarily mean the nerve cells will deteriorate over time and cause progressive disability. Everyone's course is different. Like Dr. Phil says, "The best predictor of future behavior is past behavior." If you have done well over the past years, it is quite likely you will continue to do well. If you have shown signs of progressive disease; however, it is probable you will continue along that course.
7) I was diagnosed in 1986 with relapsing-remitting MS but have not had a relapse for 20 years. Two months ago, I was diagnosed with cancer. I have to have surgery, chemotherapy, radiation therapy and hormone therapy. Can cancer treatments "wake up" latent MS and cause attacks?
Although it is possible to have an MS attack triggered after a surgical procedure, the probability is reasonably small if you have not had a relapse in 20 years. Should it occur, the attack symptoms can be treated with steroids, if needed. Chemotherapy may actually provide some benefit in terms of relapse prevention as chemotherapies are potent immunosuppressants that can dampen down the excessive autoimmune inflammation in MS. The effects of radiation therapy and hormone therapy on MS are likely neutral with respect to their effects on your MS, unless the radiation is to the brain or spinal cord. The effect of radiation to areas of the nervous system already damaged by MS plaque is unclear but probably should be avoided.
8) When a potential employer requests a pre-employment medical exam as part of the interview process, how should you disclose that you have MS in a case where you are recently diagnosed but doing well on an MS medication and are fully able to perform the work required in the job?
You are absolutely under no obligation to reveal to your employer that you have multiple sclerosis. The concern with revealing this information is that a potential employer may discriminate against you unfairly during the hiring process despite you not having any true disability that would affect your ability to perform the duties of that position. It is for that reason there are strict Humans Rights guidelines prohibiting an employer or potential employer from asking about medical conditions or disabilities specifically.
9) Are MS physicians strictly specialists? Do I need a referral from my family physician to see an MS physician?
Yes, we are specialists, and yes, a referral is needed from another physician before having a consultation.
10) I recently started disease-modifying therapy for relapsing-remitting MS. My doctor said the goal of my treatment is to become free of MRI activity, relapses and progression of disability. What does all this mean?
It means that, ideally, on treatment both you and your MRI will stay completely stable from this point on—no further MS attacks, no worsening of your neurological examination when it is checked at your follow-up visits and no new "white spots" on your MRI.
11) I don’t have MS, but I was treated for early stage Lyme disease two years ago. Does my exposure to Lyme disease increase my chances for getting MS?
Lyme infection shouldn’t increase your risk of subsequent MS. Although it is theorized that MS may be triggered by an infection (there are similarities between Lyme disease and MS in terms of their symptoms), the type of infection that triggers MS is still unknown. Furthermore, based on studies in MS patients, it is felt that the exposure to the environmental trigger in MS likely occurs very early in life, probably during childhood or early adolescence.
12) Are there any triggers for turning relapsing-remitting MS to the secondary progressive or relapsing-progressive forms of MS?
There are no specific triggers for the conversion from relapsing-remitting MS to secondary progressive MS, but people with MS who have a high relapse rate in the first five years usually have a more concerning disease progression than those with a low relapse rate during that time. People with MS who have frequent, early relapses usually progress faster than those who don’t.
13) How are cognitive problems associated with MS diagnosed?
Most commonly, patients will recognize that they are having problems with memory and multi-tasking at work and at home yet their friends and family might not be able to detect any major differences in the patient at all. Short mental status tests in the neurologist’s office are often very normal in these individuals as the cognitive changes are subtle. Yet if we can arrange for detailed, comprehensive tests of cognition conducted by a psychologist (called neuropsychological testing) the issues with recall and processing speed become apparent. Less commonly, it is the family members who notice a change in their loved one’s cognitive functions and bring this to our attention. In these patients, the cognitive problems are more advanced and even in-office tests will detect the abnormalities.
14) I have had relapsing-remitting MS for the last six years. Over the past two years my hands and feet have been consistently cold. Could this be a symptom of my MS?
This is a common complaint in my experience. The cold extremities can be of two types. The first type is when the limbs feel cold internally, yet they are actually warm to the touch. This occurs when MS has affected your ability to sense temperature correctly. The second type is when the limbs feel cold and in fact are objectively icy to the touch. Often in this case, the feet, and to a lesser extent the hands, are reddish/purple in colour. This latter phenomenon occurs when MS has affected the nerve supply to the blood vessels in the limbs. The temperature problems and colour changes are called “neurovascular changes”. Warm socks seem to help in either case.
15) When I self-inject with my disease-modifying drug on the left side of my body, I have mild injection site pain; but if I inject on the right side of my body, the injection site pain is much more intense. What is the reason for this?
Injection site pain can sometimes be improved with changes in injection technique. Perhaps your technique is better on the left side of your body because of your handedness. You might want to review your technique with your doctor or nurse. Have you had any prior relapses that affected sensation on one half of your body? An attack may either increase or decrease your sensitivity to pain on the affected side of your body.
16) I am a 29-year-old woman. I have had a small persistent patch of numbness near my groin since June, and in September, my big toe was numb for five hours. I have also experienced the feeling of electricity moving throughout my body for the past three weeks. Is it possible that I have MS?
Because MS can present in different ways in different people and because you are a young woman, I would suggest seeing your family doctor who may refer you to a neurologist to review your symptoms in more detail and conduct a neurological examination. Having said that, your symptoms are not quite classical for multiple sclerosis. Generally, small patches of numbness are less concerning than numbness that involves large portions or even half of the body. Symptoms that last only hours rather than days, weeks or months generally are not indicative of MS. Without a thorough investigation, I cannot be certain what to make of the feeling of electricity running through your body, but again, this description does not sound typical for MS.
17) Since disease-modifying drugs (DMDs) affect the immune system, can being on DMD therapy make you more likely to get a cold?
The currently available first-line disease-modifying drugs do not suppress the immune system and therefore do not increase your risk of contracting common colds and other viral upper respiratory tract infections. Mitoxantrone, a chemotherapy used as a second-line agent in MS, does predispose one to infections, as will the newer oral agents awaiting approval by Health Canada (fingolimod and cladribine), to a degree.
18) How do doctors know if disease-modifying drug therapy is working if everyone who has MS experiences the disease differently?
Doctors rely on the results from large clinical trials showing that when you follow a group of patients on treatment and a comparable group of patients off treatment, the group on treatment does better. This means that quite likely, patients on treatment are doing better than they would have were they not on disease-modifying therapy. The next question is: “Am I doing well enough on my current treatment or should my treatment be changed?” Your neurologist will use details of your MS history such as how many attacks you have had on your treatment, how severe those attacks have been, whether or not you are accumulating abnormalities on your neurological examination, and how your MRI looks to determine this.
19) Can high dose oxygen therapy help reduce symptoms of MS?
It has been speculated whether breathing oxygen under high pressures, called hyperbaric oxygen treatment (a similar therapy to that used to treat SCUBA divers who suffer from the “bends”), might have a beneficial role in slowing MS or even reversing the disease. Like many alternative therapies, controlled studies on this matter are lacking. But in 2004, the Cochrane Collaboration published a summary and review of the controlled studies done on the subject to date. They found there was no consistent evidence to support a beneficial effect of hyperbaric oxygen therapy in multiple sclerosis.
20) Is there any research looking into treatments for people with primary progressive MS?
Yes. Lots. In fact virtually every medication that has been tested in relapsing-remitting MS (RRMS), including the ones currently successful in improving the course of RRMS, has been tested in primary progressive MS (PPMS). The sad reality is thus far, not a single medication has shown any significant benefit in these patients. Research in PPMS is still ongoing and new therapies are under development. There is a lot of hope that an effective treatment will be found.
21) My wife has MS and she was recently rushed to the ER because we thought she was having a heart attack. It turns out that she was experiencing an “MS hug”. What is the MS hug and what are the symptoms?
The “MS hug” describes a symptom that many people with MS have experienced. It is caused by the formation of an MS plaque within the spinal cord and this affects the nerve pathways for sensation that run through it. When this area of the spinal cord is affected, the person feels like the affected part of the body is wrapped in a tight band. If the plaque occurs in the nerve pathway for sensation to the leg, the person will describe it like they are “wearing tight stockings” or “wrapped in elastic bands”; if the hand and arm are affected, people feel like “I’m wearing a tight glove”; if the area around the belly/abdomen is affected, they feel like they are wearing “a tight girdle”; and if the chest is involved, they feel like they are being tightly hugged.
22) I have RRMS. Over the past few months I have been very sensitive to noises. For example, if the TV is too loud or if the phone rings I become very agitated and irritable. Could this be a symptom of my MS?
Noise sensitivity, while not common in MS, does occur in some individuals. It appears to be due to demyelination within the central pathways for hearing within the brain. This leads to an unpleasant sensitivity to loud noises.
23) Why do more women than men have MS?
The female to male ratio in MS is currently approximately 3:1.1 While curious and still unexplained, the higher prevalence of MS in women is not unusual in the area of autoimmune diseases. In fact, many autoimmune diseases have a much higher female to male ratio. For example, the female to male ratio for rheumatoid arthritis is 4:1, for autoimmune thyroid disease it’s 8:1, and for systemic lupus it’s 9:1. The effects of female hormones (estrogen and progesterone) on autoimmune disease are being investigated, as are the effects of pregnancy (having a foreign body growing within you). Also under investigation are specific environmental influences particular to women, and whether having an extra X-chromosome, compared to men, has an impact on women’s predisposition to autoimmune disease.
1. Orton SM, et al. Lancet Neurol. 2006;5:932-6.
24) I’m considering travelling to Europe to receive CCSVI treatment (the Liberation Treatment), which is against my neurologist’s advice. Can my neurologist refuse to see me as a patient if I go against his advice?
Some patients, after careful education by their neurologist and reflection upon personal preferences concerning treatment, choose forms of treatment that are considered unconventional. They are unconventional in that they are, as yet, unproven with respect to their overall benefit in MS. Some of these therapies include, but are not limited to naturopathic/homeopathic treatments, acupuncture, meditation, yoga, herbal remedies and specific diets. Because there is still need for further medical evidence to confirm that CCSVI treatment is a medically relevant phenomenon in MS, and whether treatment for it is beneficial to patients, the CCSVI treatment is currently considered unconventional. Even though you may choose to undertake an unconventional treatment regime, neurologists generally suggest you continue to be followed regularly in order to keep yourself informed of your own MS course over time and so you can continue to make educated, informed decisions about your own therapy.
25) I have been on an injectable disease-modifying therapy for six years. My side effects are manageable and I have had only one minor relapse. I am looking forward to oral therapies coming to market because of how they might affect my lifestyle. Is it a good idea to switch to oral therapy even though my MS is manageable with injectable medication?
In Canada, many people with MS, and their neurologists, will soon be faced with the decision about if or when to switch to oral medication. The choice would be more clear-cut if the oral medications were definitively more effective, better tolerated, less risky, and cheaper than the injectables. While oral medications are anticipated to be well tolerated, studies are ongoing as to efficacy in comparison with current therapies. Oral treatments for MS are likely to be quite expensive and will have some inherent risks that are not seen with the current injectable therapies. The decision should be made in discussion with your neurologist, weighing these factors: how well you are doing on your current disease modifying therapy, how well (or poorly) you tolerate your injections, lifestyle issues, whether the risk to benefit ratio is acceptable in your case, and if the new drugs will be affordable to you.
26) Is it true that people who have MS are more likely to have a stroke than those in the general population? If so, why?
No, having multiple sclerosis is not known to increase your risk of stroke.
27) I have RRMS and I have been relapse-free for three years. Can having a general anaesthetic increase my chances of having a relapse?
It is fairly well known that MS patients may have a relapse after a surgical procedure, similar to how MS relapses can occur after an infection or immunization. However, it’s probably not due to the type of anaesthetic that is used, either a general or local anaesthetic, but rather the act of surgery itself that stimulates the immune system and leads to a relapse. Generally, we do not advise MS patients to avoid surgeries that are required, nor do we advise patients to avoid their yearly vaccinations.
28) In addition to bladder incontinence, are there other symptoms of MS that can be treated with botulinum toxin (e.g., Botox®) injections?
Spasticity, or stiffness, of limb muscles is a common complaint of many MS patients and this can be treated, on occasion, with Botox®. The toxin is injected into the tight muscle to paralyze it, causing it to relax. The effect lasts about 3 months, at which point repeat treatment is required.
29) I have recently been diagnosed with RRMS and I’ve been reading a lot about my condition. I keep coming across the phrase “MRI lesions consistent with MS”. What exactly does this statement mean?
Spots, or lesions, on an MRI can be caused by many things. Spots that are typical of MS are round to oval in shape, often with their long axis oriented at right angles to the hollow spaces within the brain, called ventricles; are unevenly scattered throughout the brain, but with a tendency to be either right up close to the ventricles, called periventricular lesions, or right up close to the grey matter surface of the brain, called juxtacortical lesions. MS also tends to produce spots in certain parts of the brain more often than other disorders, such as in the large tract of white matter that connects the two cerebral hemispheres, called the corpus callosum; and within the spinal cord. There are published criteria that radiologists use when they are looking at MRI scans to determine if the abnormalities they see are compatible or consistent with MS. But remember, MRI is only used as a helpful tool in diagnosis, and having an MRI consistent with MS does not necessarily mean you have MS. MS can only be diagnosed if you have a history and physical examination compatible with MS as well.
30) Can curcumin supplements help reduce the relapse rate in MS?
Thus far, apart from becoming pregnant, the only proven way to decrease your relapse rate is through the use of immunomodulatory agents, which have proven benefits on relapse rates in clinical trials. While natural remedies may have some benefit, their effects remain unproven as there are no good quality clinical trials using naturopathic remedies in MS to date. Without proper clinical trials, we cannot say if a particular treatment has a beneficial effect, a harmful effect or has no effect at all.
31) How do botulinum toxin (e.g., Botox®) injections into the wall of the bladder help with incontinence for people who have MS? How long do the effects from the injections last?
MS can cause impairment of the bladder’s ability to store urine or to empty itself. This can result in irritatingly frequent bladder contractions or blocking off the exit route of urine out of the bladder and into the urethra. Botox temporarily weakens muscles. Botox can be injected into the bladder wall to weaken the muscle and therefore reduce unwanted bladder contractions that cause urinary incontinence. It can also be injected into the muscle at the bladder neck at the junction between the bladder and the urethra to relax the muscle and allow the bladder to empty. Because the effects of Botox are temporary, repeated injections are needed, approximately every 3 to 6 months.
32) I heard of a new study that links a certain type of intestinal tract bacteria to MS. Can you explain how this relationship might work?
There is lots of controversy and theory surrounding how and why MS comes about. Recently, a research group in the US proposed that an imbalance of intestinal bacteria may result in inappropriate activation of the immune system, which might in turn result in an autoimmune disease, such as multiple sclerosis.
33) Aside from eating a balanced diet, are there any known “MS health foods” I should be incorporating into my diet?
Very little has been proven with respect to what diet would be optimal in MS. Certainly adequate vitamin D intake and supplementation is currently advisable. Another possible dietary modification that might help is a balanced intake of foods rich in omega-3 and -6 essential fatty acids, such as oily fish.
34) Is it possible to develop a tolerance to disease-modifying therapy? How will I know if I’ve developed a tolerance?
It is possible to build up “neutralizing antibodies” to the interferons used to modify the course of MS. These neutralizing antibodies may reduce the efficacy of the drug. You have to be on interferon for some time before the antibodies can be produced. There may be no clues that you, yourself, have built up neutralizing antibodies, but if your MS course seems unchanged despite interferon treatment, these neutralizing antibodies can be detected through a special blood test ordered by your neurologist.
35) I’ve had a few late nights this past month with summer parties and weddings. They leave me feeling totally exhausted and it takes me a few days to recover. Will pushing myself like this make my MS progress faster?
“Pushing yourself” probably won’t make your MS progress faster, but it will make you feel symptomatically worse for quite a while after you have “overdone it”. Don’t beat yourself up over a few late nights now and then. You have to live your life, and weddings, parties and a social life are tremendously important not to miss out on. Just aim for balance.
36) Every so often, I go through bouts of vertigo that can last for quite a few days. Could the vertigo be a symptom of my MS?
Vertigo is a common phenomenon in many people even without MS. There are many causes of vertigo, most are related to a disturbance of the inner ear. Occasionally, however, vertigo can be caused by MS. If an MS patient develops a single spell of vertigo lasting days or more, especially if it is associated with other neurological symptoms like double vision, slurring of speech, or imbalance, this vertigo is likely due to an MS attack and can be blamed on a new MS plaque arising within the balance/equilibrium centres of the brain. If vertigo is a recurring problem with you, it could be considered a “paroxysmal” symptom of MS – something that doesn’t necessarily mean your MS is active, but rather your symptoms are due to an old plaque that has incompletely healed. Paroxysmal symptoms can be prevented or lessened with the use of certain medications about which you can speak with your neurologist. Your neurologist can also screen you for the more common causes of vertigo, which may be completely unrelated to your MS.
37) What is involved with the stem cell treatment for MS? What is the theory behind it and who are the best candidates?
Stem cell therapy is being investigated as to its possible role in the treatment of MS. Stem cells are primitive cells that exist in small numbers in our bodies that have the potential to “differentiate” into many types of tissues. They are immature cells that have not yet been assigned a destiny. They could mature or differentiate to be a heart muscle cell, a bone-producing cell, or even a neuron or myelin-producing cell. The theory in harvesting one’s own stem cells, taking them to the laboratory and stimulating them to divide into sufficient numbers, is that we can re-introduce them into the body and they will hone in on areas of damage and try to repair this damage by differentiating into whatever mature cells are needed. In MS, the hope is that they will re-myelinate plaques and perhaps even replace damaged nerve cells. This is, however, demanding quite a bit from these cells and so far the evidence for significant repair in MS is still lacking.
Stem cells hold out one more possible hope as a treatment in MS. These cells also have an uncanny ability to calm down an overactive immune system. How they do this is still largely unknown, but it is this anti-inflammatory property of stem cells, probably more so than the repair qualities, that may potentially benefit patients who have severe forms of MS.
Ultimately, stem cell treatments are still in their infancy and still experimental. More information needs to be obtained from experimental studies to really determine if there is a significant benefit of stem cell treatment and for which kinds of MS.
38) My family and I are planning a road trip to California this summer. I am feeling well and up to travelling but I am worried about how it may affect my injections. Do I have to make any modifications to my therapy because of the long car ride we are taking?
Vacationing when you have MS and are on an injectable disease modifying agent does often require some forethought. You do want to maintain your medication administration on schedule while you are away and you want to make sure the medication is not damaged during travel. Many of the injectable therapies require refrigeration. The time allowed to be left at room temperature is different for each drug. Furthermore, none of the medications should be exposed to high temperatures. For a long car ride, cooling packs in a lunch kit or cooler bag, which can be provided by the pharmaceutical company, can be useful. In general, Avonex® pre-filled syringes can be left unrefrigerated for only up to 1 week, while Copaxone® and Rebif® pre-filled syringes can be left at room temperature up to an entire month. Betaseron® powder requires no refrigeration at all, but once it has been mixed with solution, it must be used within 3 hours. Check the label on your medication and consult with your neurologist and/or the pharmaceutical company to make sure you know the refrigeration requirements of the drug you are on.
39) I have had MS for the past 14 years. Is the Liberation treatment, or CCSVI, a realistic option for me if or when it is approved in Canada?
As you know, the Liberation treatment is currently not an approved treatment modality in Canada and is still considered experimental, pending further study. Any treatment decision, whether medication or surgery, approved or experimental, should be made after careful weighing of the risks versus the benefits. Your treating neurologist who knows your disease course best would be better able to advise you on therapy tailored to suit your particular case, maximizing the benefits while minimizing risks.
40) I just heard there is a new interferon injectable therapy available. I want to consider switching to it because I have been struggling with my current DMD therapy. What do you know about the new medication so far?
Yes, there is now a second pharmaceutical company producing interferon beta-1b. Interferon beta-1b, marketed as Betaseron®, originally manufactured by Berlex later transferred to Bayer, was the first medication ever, historically, to show any sort of significant benefit in altering the disease course in MS. It has shown long-term efficacy and also long-term safety. This year the pharmaceutical company, Novartis, has released its own version of interferon beta-1b. It is chemically and biologically identical to the original. The differences are the name, packaging, support programs available through the pharmaceutical company, and a slight difference in cost.
41) With the summer coming I am worried about fatigue and feeling even more tired than I usually do. Is there anything I can do to help with my fatigue so I can enjoy the nice sunny days while they are here?
Heat can be a real problem for some patients. And although heat itself doesn’t worsen MS, per se, it certainly can make MS symptoms, particularly MS-related fatigue, feel much worse. Some measures you can try include: wearing a wide-brimmed hat in the sun, wearing cool clothing, sitting in the shade as opposed to under the direct rays of the sun, outdoor fans (some even have a mister attachment to blow a cool mist over you!), keeping well hydrated with iced beverages and taking frequent breaks to go indoors into an air conditioned environment.
42) I keep hearing about oral MS therapies that will soon be available. Is this true? How much better will they be than my current injectable therapy?
It is anticipated that two oral therapies will become available within the next year, pending approval by Health Canada. These therapies are fingolimod and cladribine tablets. It is currently not known if these will be more effective than our current medications. This will need more research. The only way to really tell this, if one drug is ‘better’ than another, is to run an experiment pitting one drug against the other in a head-to-head trial in a group of similar MS patients. A 1-year head-to-head study did show some superiority of fingolimod over intramuscular (injectable) interferon beta-1a, but this is too short a time to draw any definite conclusions regarding long-term efficacy.
43) Why didn’t MS oral therapies come out first? Wouldn’t most people rather take a pill than an injection?
An oral agent has been something that many Canadians with MS have been hoping for. Until recently, no oral agent tested had shown significant promise in large advanced-phase clinical trials.
44) I have been using injectable MS therapy for 15 months, but I really want to switch to the oral medication when it is available. What should I consider before making the switch?
These agents may not be suitable for all patients. Each individual patient will need to discuss risks versus benefits with their treating neurologist when making treatment decisions. Your type of MS, your course on your current injectable agent, the tolerability of your current injectable agent, what agents you may have used in the past, cost, and lifestyle factors will all need to be taken into consideration.
45) Friends in my MS network are talking about the new oral therapies that will soon be available. I am worried about the supporting data for these medications—have there been enough studies on it to be sure they are safe and work effectively?
These two oral agents, although long awaited by MS patients who would like to switch from their injectable treatments, may pose new risks that are not seen with the current injectable therapies. If/when approved, approval will be based on 2 individual, large, 2-year experimental trials in MS patients. Long-term safety and efficacy of these drugs in MS will still need to be monitored, even after the drugs have been approved and marketed.
46) There are two flu vaccines available this year; one for seasonal influenza and one for the H1N1 virus. Should people with MS who are on disease-modifying drug therapy consider taking one vaccine over the other?
There has been much anticipation and interest in the H1N1 flu virus and its vaccine with provincial and territory vaccination programs rolling out this month. H1N1 is a strain of influenza (flu) virus similar to the seasonal flu virus but with a critical difference: while the seasonal flu virus that we are familiar with is most dangerous for the elderly , the H1N1 virus, on the other hand, primarily affects young, otherwise healthy people; usually children and young adults (average age of 18). The H1N1 virus is expected to be the predominant flu strain circulating this fall and winter (2009/2010).
The H1N1 vaccine prepared as part of this year’s flu vaccine program is essentially a regular flu vaccine. Every year, the strains of seasonal flu virus change and scientists track these changes around the globe. The strains deemed important for inclusion in each year’s batch are determined by February or March of that year. However, the H1N1 strain emerged in March and April 2009, so it did not make it into the batch of regular flu vaccine, and thus a separate H1N1 vaccine is being prepared. In years to come, it is highly likely it will be included in the typical annual flu shot. The vaccine continues to be tested for safety as it is released. It is not anticipated to pose any major safety concerns for people with MS and is generally recommended for people with MS under the age of 65. The first-line disease-modifying agents for MS are unlikely to pose any additional risks to people receiving the H1N1 vaccine (however, no clinical trials have been conducted in people taking disease-modifying therapy for MS who have received the H1N1 vaccine.)
It should be noted that the regular seasonal flu vaccine is also safe and effective for people with MS. But again, the H1N1 flu virus is anticipated to be more prevalent than seasonal flu virus this year. Both vaccines are generally advisable for people with MS at this time, after speaking with their physician.
47) Is there a link between cold weather and MS flare-ups?
There does seem to be a seasonal pattern to MS attacks. In Canada, spring and early fall pose the highest risks. It does not seem to be the cold weather per se, but more likely the viral illnesses (specifically upper respiratory tract infections), which tend to flare up in these times, that may trigger MS attacks. One third of MS attacks tend to follow ordinary viral infections like the common cold. This was studied by Dr. William Sibley, between 1976 and 1984, the work for which he received the 2006 Dystel Prize for Multiple Sclerosis Research bestowed by the American Academy of Neurology. It was this work that actually led to the first effective treatment in MS, interferon, as it was hypothesized that if viruses triggered MS attacks, perhaps the antiviral effects of interferon may suppress them.
48) There has been recent media attention to the development of oral drug therapies for MS. How soon will they be available in Canada?
A pill (oral therapy) that will modify the course of MS has been long awaited and now seems to be within grasp. The results of large clinical trials of two oral medications (cladribine tablets and fingolimod) have recently been reported. The results show significant benefit to people with relapsing-remitting MS. EMD Serono has applied for marketing approval of cladribine tablets in the U.S. and the European Union, and I anticipate Canada will follow shortly. Novartis is planning on similar proceedings in these regions for fingolimod approval in 2010.
49) Will taking vitamin B supplements prevent the development of MS?
Vitamins preventing MS is an interesting possibility and a topic of ongoing study.
B vitamins, specifically B12, are needed for the body to make myelin, the fatty coating surrounding nerve fibres that are under attack in MS. B12 deficiency can mimic symptoms of MS, but so far no significant association has been made between the two.
Alternatively, several lines of evidence suggest a link between vitamin D deficiency and MS. For instance, MS is most prevalent in the temperate areas north and south of the equator where less sunlight is received. Therefore, the people in these areas tend to be deficient in sun-derived vitamin D. Additionally, one very large Nurses’ Health Study has shown those who took 400 IU (international units) of vitamin D daily were less likely to get MS than those who did not. There is also a potential link between vitamin D deficiency early in life, possibly even during gestation (in the mother’s womb), and the development of MS as an adult. Fewer people with MS are born in November and more in May, supporting a gestational risk effect of diminished sunlight. There may be an interaction between sunshine, vitamin D and how genes are expressed that determines the risk of MS.
It is still unknown whether vitamin D deficiency itself or another linked co-variable is the source of these observations; but vitamin D is being actively researched as a possible critical factor in causing MS.
Vitamin deficiencies are known to cause various illnesses, and deficiencies generally should be avoided. In the case of vitamin D, one should ensure at least the recommended daily intake (400 IU daily for adults) via foodstuffs and supplements. In parts of the world, such as Canada, that receive indirect sunlight for a substantial part of the year, 1,000 IU is recommended in the fall and winter months for light-skinned individuals, and 1,000 IU daily year round for those with dark skin or who have less than average sun-exposure (those who spend little time outdoors or those who wear clothing that covers most of their skin). Whether higher doses are required and are safe remains to be seen. It is important to know that too much vitamin D can be toxic. Case-by-case decisions as to dose of supplementation should be made under the advice of a trained physician.
50) After my recent RRMS diagnosis, I started a special diet that is supposed to reduce or even reverse the progression of MS. But, it can take up to two years to work fully. Has there been any research to show that special diets can slow the progression of disability in MS? Is this a result of diet alone or in combination with disease-modifying drug therapy?
Many dietary regimens have been proposed for patients with MS, but to date, there is no strong data to support a specific diet for people with MS. Most diets for MS have not been rigorously tested, and those that have been, have generally been met with mixed results. That is not to say diet does not have an impact—even a significant one. It is just to say the proof of such a diet effect is lacking.
Thus far, the only modifiable factor that has shown a proven impact on MS is medication. The current disease-modifying agents have been rigorously tested in large clinical trials and have proven efficacy as disease modifying agents.
Generally, a balanced diet, such as that advocated by Canada’s Food Guide, is recommended by Canadian MS specialists. If an alternative diet is chosen, it is generally recommended to be undertaken in addition to conventional MS treatment.
51) Are people with MS at a greater risk of having a stroke?
Patients with MS do not have a higher risk of stroke than the general population. However, sometimes MS can be confused with small strokes on MRI (magnetic resonance imaging). When the picture is unclear, a few further investigations (like a spinal tap, evoked potential testing, likely repeating MRI scans and letting some time pass) often clarify the diagnosis.
52) I am newly diagnosed and am confused about how long an MS attack is supposed to last. I seem to have some symptoms that come and go, depending on the week, but others that have been persistent for the past 8 months (numbness in legs, fatigue, muscle spasms). I know that everyone's MS is different, but I am not sure what to expect.
An MS “attack” or “relapse” is when symptoms arise due to the formation of a new MS plaque in the CNS (central nervous system). Most attacks develop over hours to days, reach a peak and then gradually improve. The very shortest MS attacks last only 24 hours; these are rare. Most attacks take days to weeks to months to improve—the average being six weeks. Confusion occurs because attacks don’t always completely go away. They can leave you with some symptoms (e.g., residual neurological disability) permanently. The attack that seems to be lingering a year later is probably residual disability. Residual symptoms from an attack are often called “chronic symptoms”. Chronic symptoms can wax and wane but tend to be worse when you are tired or sick. Some chronic symptoms like tingling, burning and muscle spasms can be masked somewhat with medications or other means. There are also medications and conservative measures that you can try to combat MS-related fatigue. You can speak with your neurologist about management options if bothersome symptoms don’t seem to be resolving on their own.
53) My husband has recently been diagnosed with MS and we are considering having another child. How does MS affect fertility in men?
MS does not reduce fertility in either men or women. MS can, however, alter libido in both sexes and in men with MS a rather common complaint is erectile dysfunction (ED). The reflex arc required to achieve and maintain an erection is similar to that involved in bladder control. And just like bladder control issues are a common problem in MS, so is ED. Fortunately, the emergence of several oral prescription medications (e.g., sildenafil [Viagra®], the first and probably most familiar) has been helpful to many men with ED, as these drugs completely bypass the neural circuitry and act right on penile blood vessels to achieve their effect.
54) I’m 57 years old and in addition to MS, I’m going through menopause. I experience great fatigue from late morning until evening. How I can boost my energy levels in order to stay active?
Fatigue can be a disabling symptom and really very little is known about why it occurs in MS. Ironically, fatigue doesn’t necessarily correlate with the severity of MS. What I mean by this is, many patients who look otherwise normal and have no problems on physical examination can be plagued by debilitating MS-related fatigue. The converse can also be true. Patients can have quite severe muscular weakness necessitating the use of a wheelchair, yet have excellent mental and physical stamina and energy levels. Although fatigue is common in MS, it is also common for a number of other reasons and we shouldn’t be too quick to blame it all on MS without assessing possible contributors.
Try asking yourself the following questions:
• Are you getting adequate night time sleep?
• Might one or more of your medications have sleepiness as a side-effect? If so, could they be changed or the dosage lowered?
• How is your mood? Low mood and depression are frequently associated with a drop in energy.
• Are you physically deconditioned?
• Are there other possible medical reasons, like anemia or thyroid dysfunction, for your fatigue?
These should all be explored with your doctor.
Once non-MS contributors have been ruled out or dealt with, you can address any remaining MS-related fatigue through a multimodal approach. First, it is recommended to eat a balanced diet. Second, get at least a modest amount of aerobic exercise—equivalent to a brisk 30-minute walk 3 to 4 days per week. You can exercise more if it feels right, but try not to overdo it. Although excessive exercise isn’t harmful to the nervous system in MS, it will wipe you out and take you longer to regain your energy. You can also try keeping a diary to help you recognise if there are any activities or “triggers” to your fatigue (e.g., heat, stress, prolonged exercise, long work days, and certain medications). You’ll soon identify what your limitations are and what you should avoid. Apart from the aerobic exercise routine, be gentle with yourself. Plan to do your work during the part of the day in which fatigue is typically less severe for you. Find methods that conserve energy while working. For instance, why stand to do the dishes if you could use a stool? Keep a basket at the bottom of the stairs to collect items that need to go up. Why make several trips upstairs when you could do it in just one? Simple changes like this can be a big difference when added up at the end of the day whether you are at home or in the workplace. Take frequent rest periods throughout the day and nap if you need to so long as it doesn’t impair your night time sleep. Sometimes, outside help can be obtained for housecleaning and mowing the lawn. Other times, work hours can be shortened to accommodate decreased stamina. Last, there are several medications that can help; both amantadine and modafinil are oral medications used frequently for MS-related fatigue. An antidepressant medication such as fluoxetine (Prozac®) can also be used to improve energy and is a logical choice if depression is an issue. You can discuss these options with your neurologist.
55) I understand that many people will be exposed to the Epstein-Barr virus (EBV) in their lifetime and it can remain dormant in their B lymphocytes until reactivated. Since MS is an autoimmune disease and disease-modifying drug therapy can suppress the immune system, are people with MS at greater risk for reactivation of EBV?
Epstein-Barr virus (EBV) is a common virus; nearly 95% of us have been infected with it by mid-adulthood. After infection, the virus lies dormant in the body, but can “reactivate” at any time. This reactivation is not associated with any symptoms, but the patient unknowingly is shedding virus in his/her saliva and can then spread it to non-infected individuals. While it is being investigated whether or not there may be a link between prior EBV infection and later MS, the jury is still out. Furthermore, although MS is felt to be an autoimmune disease (this means the body is mounting an abnormal/excessive immune attack against itself); it is not a problem of immunodeficiency. The immune system in MS is misguided—perhaps even overactive—but not underactive. MS patients are not at increased likelihood of infections, viral or otherwise. The current first-line disease modifying drugs (interferons and glatiramer acetate) modulate or change the immune system to curb the attack on itself but they do not suppress the immune system. There is no increase in infections or infectious reactivation with these particular medications. The more aggressive second-line disease-modifying drug, natalizumab, often used when first-line agents have failed, is a quite a different story. With natalizumab, the risk of infection or reactivation of dormant infection is something that needs to be weighed in treatment decisions.
56) Will laser eye surgery help correct MS-associated vision problems (e.g., myopia, optic neuritis, etc.)?
Vision loss due to multiple sclerosis is usually caused by inflammation or damage to the optic nerve, a phenomenon called optic neuritis. Unfortunately, neither corrective lenses nor laser eye correction will improve visual acuity in these cases.
57) Is the rate of disease progression dependent on age at onset? (i.e., is there a difference in how fast the disease will progress for someone diagnosed at age 20 versus someone diagnosed at age 70?)
The rate of disease progression is slower in younger-onset MS. Having said that, if you look at the ages of MS disability onset, people with younger-onset MS still become disabled at younger ages than older-onset MS cases. Thus, it is not necessarily better to have a younger age of onset than an older one.
58) I recently read that MS continues to progress silently even though there are no physical exacerbations. Is that true? Even though I have not had an exacerbation in about 18 months, could the illness be progressing in my body without my knowing it?
MS relapses can be just the “tip of the iceberg” when it comes to what is going on within the brain beyond the level of your conscious awareness. Even between attacks, in people who feel otherwise well, a magnetic resonance imaging (MRI) scan can detect ongoing inflammation and loss of brain tissue over time. In fact, feeling well is often a reason people give to avoid taking disease-modifying treatment. “I feel too well to take medication!” In some cases, indeed, their course of MS is mild or inactive, so medications are not necessary. In others, the disease is progressing under the surface. In these cases, people should be encouraged to take a preventative disease-modifying drug (DMD) treatment, if one is suitable. And if people are already on a DMD treatment, MRI can help confirm their medication is working. It is important to have regular follow-up visits with your neurologist to determine whether your physical examination and your MRI also indicate you are doing well.
59) I was diagnosed with MS this year, and for the past month, food has tasted different. Nothing that I eat tastes like it used to; everything tastes strange. Does MS change the way food tastes?
The alteration of taste is called dysgeusia. MS itself does not commonly affect one’s sense of taste. Dysgeusia is more likely a side effect of medication. For example, the drug topiramate, used for seizures, migraines and neuropathic pain can cause dysgeusia. Your sense of taste also can be altered if your mouth is dry. Dry mouth is a common side effect of medications used in MS (like amantadine, used for MS-related fatigue, and bladder medications like oxybutynin and tolteridine). Apart from medications, dysgeusia has been associated with deficiencies in vitamin B12 and zinc. Lastly, recall that your perception of taste is actually largely due to your sense of smell. That is why food becomes rather tasteless when you have a cold. Ensure you haven’t recently been suffering from nasal blockage or congestion unrelated to your MS.
60) Are there types of vitamin D that the body will absorb better than others?
In supplements and fortified foods, vitamin D is available in two forms, D2 (ergocalciferol) and D3 (cholecalciferol). Further research is needed on the comparative physiological effects (i.e., effects on the body) of both forms but it is felt that D3 may be up to 3 times more efficient at raising blood levels of vitamin D’s active metabolite (the form of vitamin D actually used by the body) in the blood. Many supplements are being reformulated to contain vitamin D3 instead of vitamin D2.
The comments and opinions in the Ask the Expert section are not necessarily those of MS Village, but rather those of the medical expert profiled. This feature is intended solely for informational purposes and is not a substitute for routine or urgent medical evaluation, treatment or consultation. Dr. MacLean’s responses should not be construed as medical opinions aimed at establishing a diagnosis or course of treatment. At no time should the information presented replace or supersede the recommendations of your own physician. If you have any concerns, please take the information or questions to your physician. Questions may be edited for space and clarity.
