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Multiple Sclerosis

In February 2007, our guest expert in Le Club's Ask the Expert was Deanna Groetzinger, National Vice-President, Government Relations & Policy with the Multiple Sclerosis Society of Canada.

Deanna works with volunteers and staff across the country in meeting the goal of informing people about MS and the work of the MS Society, and in ensuring that people with MS have the opportunity to participate fully in all aspects of life. She also works with volunteers and researchers to communicate MS research and health information issues and to educate governments about the importance of MS research.

She has an MA from the University of Waterloo in political science, with a specialty in communications theory. She worked as a journalist at newspapers in Canada and the United States before joining the MS Society of Canada.

The Multiple Sclerosis Society of Canada is a national Canadian organization that supports both MS research and services for people with MS and their families. The Society has funded research since its founding in 1948.

Here are Deanna’s answers to your questions about Multiple Sclerosis:

Q:  I have two questions. Firstly, is there any information available about MS and foods/vitamins/herbs to avoid? For example, I have been told that green tea stimulates the immune system, which is something we don't want to do.

Secondly, I have been experiencing tingling in my whole body for months now. However, my spine feels like it is on fire. Should I be concerned, or is this something that I need to get use to?

A: Although there has been speculation over the years, there is no hard scientific evidence to suggest that there is any particular food, vitamin or herb which taken in moderation would negatively impact MS. Conventional medicine supports eating a balanced, healthy diet that corresponds to the Canada Food Guide (there is an updated and interactive version now available).

However, a cautious approach should be taken when considering the use of supplements, since very little research has been done on most of the dietary supplements that are sometimes promoted for use in MS. Here are some important things to remember: 

  • The fact that a supplement is deemed ‘natural’ does not necessarily mean that it is safe or beneficial.
  • Supplements, like prescription medications, are not necessarily side-effect free.
  • Combinations of supplements with conventional medications have not been fully investigated. Not much is known about how the interactions might affect the safety, side effect profile, or benefit of conventional medications or supplements.
  • In theory, products that claim to ‘strengthen’ or ‘enhance’ the immune system should be avoided. The immune system of a person with MS is already overactive and should not be enhanced in any way.

A sensible strategy is to investigate products carefully and discuss them with your physician. 

In response to your second question, abnormal feelings and sensory symptoms such as numbness and tingling are among the most common complaints in MS. They are usually an annoyance rather than a truly disabling symptom.

Tingling is considered to be a ‘paresthesia’; a group of abnormal sensations such as tingling, burning, prickling or creeping on the skin.  While unpleasant to experience, these sensations in themselves do not imply a worsening of the disease.  If the sensations are painful, you should speak with your physician about symptom management medications that may help.


Q: What type of MS renders someone hospital bound indefinitely? This has happened to someone close to me and I never understood why. (For more info, the person was diagnosed in mid-20s, coupled with epilepsy. Within two years, and a within months of a second child, she was then kept in hospital. Now in her 60s, the MS is said to have been in remission for nearly a decade, but she has not been discharged.)

A: The situation described is fortunately a very rare form of MS in which the MS plaque (lesion) involves a very critical part of the central nervous system. The more typical course of MS is that of periods of worsening (relapses or attacks) followed by periods of remission. This pattern of relapses and remissions can occur for many years.

It might be helpful to distinguish type of MS from disease course.  For example, a person may have a progressive type of MS (where symptoms occur without remission), but may not have a particularly severe course.  People with MS who require long-term care have likely experienced a more severe course of disease. 

It is important to know that a diagnosis of primary-progressive, secondary-progressive, or progressive-relapsing MS does not mean one will experience this degree of disability.  For information on types of MS see: http://www.mssociety.ca/en/information/types.htm


Q: Is MS hereditary?  Is myasthenia gravis a part of MS?

A: MS is not hereditary in the usual use of the word, in that the majority of people with MS do not have a family member with the disease.  That said, research indicates there is a genetic component to the disease.  Some researchers believe MS develops because a person born with a genetic predisposition to MS reacts to some still unknown environmental agent that triggers an autoimmune response leading to MS.

Myasthenia gravis is a neuromuscular disease which is not related to MS.  While it may have some similar symptoms as MS, it is a different disease. Myasthenia gravis involves a defect in the transmission of nerve impulses to muscles. In MS, the target of the immune response is not myelin (the protective covering of nerve fibres) or nerve fibres themselves.


Q: Interesting enough, the topic of MS came up in my grade five classroom recently, so you may be receiving a lot more questions shortly from a younger audience. My questions are: What is the youngest documented age of a person with MS? Are there preventative measures one can take, or is one predisposed to the disease through our genes?

A: Although MS generally develops between the ages 15 to 40 years old, it can affect people much younger than 15 and much older than 40.  MS has been known to have been diagnosed in children as young as two years of age. This is very rare.

At this time there is no scientific evidence to suggest that MS can be prevented.  Certain environmental factors are associated with a decreased risk of developing MS (for example, exposure to vitamin D is associated with a decreased risk of developing MS). However, we know that MS also has a genetic component, and this complicated interplay of environment and genetics is not yet well understood.  Also, an association in a study (as for example, vitamin D and decreased risk) does not necessarily mean a causative one.

A major study of MS in children funded through the MS Society and its related MS Scientific Research Foundation may increase our understanding of the interplay between genetics and the environmental trigger or triggers.


Q: Are some women more prone to MS than others? Is there any way to prevent developing the disease?

A: Overall, women are more likely to develop MS than men in a ratio of about three to one. As yet, we do not know what causes MS.  Current research suggests that there is a connection between a genetic predisposition and an environmental trigger.  There is no known prevention of MS.


My daughter has MS, so we've been trying to keep up with the latest research.  I understand there has been some success recently with regrowing the myelin sheath.  Is this so?

A: Scientists are very hopeful that we will eventually be able to cause regeneration of myelin that has been destroyed in MS.  Some remyelination does occur naturally in people with MS, but it is limited. However, it indicates that cells are present in the brain which are capable of remyelination.  The trick is to get them to remyelinate more completely.  There are several different approaches:

The first involves transplantation of cells that might be more capable of remyelination. Some encouraging research shows that when these cells are injected into the blood, some of them migrate to the damaged areas of the brain, so that it might not be necessary to transplant them directly into the brain.

Stem cells capable of differentiating into myelinating cells are also found in bone marrow.  These cells could be harvested from the individual’s own bone marrow,  expanded in number, and reinjected into the person’s bloodstream.

The second approach involves enhancing the natural repair mechanisms in the brain. Scientists are trying to do this by finding ways to transform the progenitor cells or stem cells already in the body into myelinating cells. 

Much more research must be done to achieve regeneration of myelin. However, the progress made so far is encouraging.  The MS Society of Canada and its related MS Scientific Research Foundation are funding a number of research projects with the goal of finding the way to regrow or repair myelin.


Q: What is the latest information on progressive MS, and is there anything available for severe tremors in the hands and spastic legs?

A: Generally speaking, many people with MS will enter a more progressive phase of the disease about 10 years after initial onset.  This is because of increased damage to the nerve fibres as compared to the inflammatory aspect of MS that is typical in the early stage of MS when there are distinct periods of worsening (relapses) and recovery (remissions).

While there are treatments for relapsing-remitting MS, the development of treatments for primary, secondary-progressive MS, and progressive-relapsing MS has been slower. It is more difficult to show that a therapy is actually effective in slowing the progression of the disease. However, there has been progress. Novantrone® (mitoxantrone) is sometimes used to treat people with worsening relapsing-remitting MS, people with secondary-progressive MS and people with progressive-relapsing MS. People with the progressive forms of MS also benefit from managing MS symptoms and attention to a healthy lifestyle.

A number of medications may be helpful in treating tremor.  The medication prescribed will depend on the type of tremor experienced.  Some medications include hydroxyzine (Atarax®, Vistaril®), clonazepam (Klonopin®), propranolol (Inderal®), buspirone (Buspar®), ondansetron (Zofran®), primidone (Mysoline®), and acetazolamide (Diamox®).

Tremors can also sometimes also be aided with mechanical means, e.g. immobilization (using a brace), or weighting (adding weight to the part of the body to improve control over its movements).  Where tremor cannot be eliminated, maximizing function is a next best goal.  Speak with your doctor about treatment and/or a referral to the appropriate specialist.

Spasticity (which means stiffness) occurs when demyelination affects the nerves that regulate muscle tone. It is a common symptom in MS.  Reducing spasticity allows greater freedom of movement and strength, and also often improves fatigue and coordination.  On the other hand, spasticity can sometimes compensate for weakness.  For example, it’s easier to put weight on a weak leg if the muscles are stiff.  Spasticity is often treated by stretching exercises, physical therapy, and/or through the use of medication.  Medications used to manage spasticity include baclofen, tizanidine (Zanaflex®), sodium dantrolene (Dantrium®), diazepam (Valium®), and lorazepam (Ativan®).  Speak with your physician about treatment and/or a referral to the appropriate specialist. 


Are you aware of any research being done on a link between MS and other autoimmune diseases? I have MS, insulin-dependent diabetes (newly diagnosed) and interstitial cystitis.

A: Research is being been done on the possible link between MS and other autoimmune disorders, but no clear associations have emerged. At this stage in the research, the findings reflect only a similar abnormality in the immune system and do not indicate an increased risk of developing other autoimmune diseases.


Q: Is restless leg syndrome a symptom of MS?

A: Some people with MS can experience restless leg syndrome (an irresistible urge to move one’s legs).  It also occurs in other conditions such as Parkinson’s disease. Some drugs used to treat Parkinson’s disease may be helpful. Speak with your doctor about treatment and/or a referral to the appropriate specialist.


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