Multiple Sclerosis Newsletter

Multiple Sclerosis Newsletter
Northern Colorado Edition

June - July 2006

Research Updates

We interrupt this Research Update for a local bulletin: The Forty Plus Motorcycle Club of Fort Collins is having their 13th Annual M.S. Poker Run June 13th starting at the Fort Collins Motorsports. Sign-up is from 8-10 am. The cost per hand is still $10. Again this year folks with MS who can't ride the run can buy a poker hand and have one of the riders draw cards for them. The cost for each MS Ghost Rider poker hand is $10 and players are eligible for ALL prizes. All proceeds from this run go to fight MS. If interested, please call 970-223-1794 before Saturday June 12th.

* * *

Whoa Nellie - forgot about the other new item: It's called a "corrections column" and includes anything observant readers have picked up from the preceding issue which we have tried to correct.

` Corrections Column
1)Can't believe I did this – the 13th Annual 40 Plus Motorcycle Club M.S. Poker Run is actually June 11th, the second Sunday, not the 13 th, and you can sign up until Saturday, June 10th. Call 970-223-1794 for more information. And yes you are eligible for ALL poker run prizes.

Now back to our regular Research Updates:

BENIGN MS: A DANGEROUS DIAGNOSIS?
Victor Rivera, MD

benign adj. 1. of a gentle disposition; 2. showing kindness and gentleness; favorable, wholesome; 3. of a mild type and character that does not threaten health or life; having no significant effect; harmless.
(Merriam-Webster's Collegiate Dictionary, 10th ed, 1998)

For many people, the term "benign multiple sclerosis (MS)" may seem like a contradiction in terms. How can a disease as complex as MS ever be classified as "harmless" or "mild"?

To help gain some clarity on this topic, MultipleSclerosis.com spoke with MS specialist Victor Rivera, MD, a neurologist and medical director of the Maxine Mesinger MS Clinic located at the Methodist Neurological Institute in Houston, Texas. Dr. Rivera is involved in MS research as well as treatment of the disease.

MultipleSclerosis.com: What is benign MS?

Dr. Rivera: According to the National Multiple Sclerosis Society, if a person remains with very low Expanded Disability Status Scores (EDSS) of 3.5 or less after 15 years of disease, then the MS is considered benign.

Researchers have also performed very large population studies. They have come up with a similar definition, but they don't go as far as 15 years. They say 10 years. I think between 10 and 15 years with a disability score of less than 3.5 is for most people a type of benign MS.

MultipleSclerosis.com: When someone is first diagnosed with MS, are there any hints or indications of how the disease course is going to go?

Dr. Rivera: A small percentage of patients with relapsing-remitting MS or primary-progressive MS may qualify for being diagnosed with benign MS after they are monitored over time. The determination if a patient has a benign course is always retrospective, and the issue is: can we take a chance of no treatment in the hopes of disease stability?

Treatment with disease-modifying drugs is almost always recommended because there is no way to truly diagnose benign MS in the early years. The disease is just too unpredictable.

For instance, men tend to not do as well as women; also, if the person has significant neurological dysfunction early in the disease, or certain symptoms such as spasticity or bladder dysfunction, frequent relapses with incomplete recovery, and, finally, if there are a large number of lesions seen on magnetic resonance imaging (MRI) scans. All of these markers indicate that these patients may not do as well.

However, this doesn't mean that all men diagnosed with MS or all people who have spasticity early in the disease will have a more progressive or worse course. It just means that they have a higher risk.

In addition, scientists have discovered that damage to the axons (nerve fibers) may occur early in MS, without any clinical symptoms. This could lead to disability later on.

MultipleSclerosis.com: Do you base which treatment you will use on these risk factors?

Dr. Rivera: Decisions about therapy are based on evidence-based medicine, which means that vigorous, scientific studies back up the findings.

If the patient has clinically isolated syndrome (CIS) but has prominent MRI lesions, then that patient most likely should go on a high-dose interferon (Betaseron, Rebif). CIS refers to a one-time event or episode characterized by symptoms that are related to the loss of myelin (the protective coating that insulates axons, or nerve fibers). Low-dose interferon (Avonex) is accepted treatment for CIS when this is present with discrete MRI lesions.

Also, most patients who have enhancement on MRI, which indicates inflammatory or active disease, do well with high-dose interferons.

In other words, the most inflammatory the disease, the better response to interferons. Glatiramer acetate (Copaxone) also plays a role in different types of relapsing forms of multiple sclerosis. At times, we use steroids when a person is experiencing an acute relapse.

MultipleSclerosis.com: If someone has been on one of these medications for 10 to 15 years and has had few relapses and little or no disability, is it still seen as benign MS? Or could it be the medication that is causing the condition to appear "benign"?

Dr. Rivera: From what we understand at this time, the medication is going to make a substantial difference in the behavior of the disease.

As a physician, I don't care if it's the medicine or the natural course of the disease in that person. The outcome is what is important in multiple sclerosis.

However, it is quite possible that the medications currently available are making a difference in the behavior of the disease long-term. This is a personal observation; this is not published as a pivotal trial. It is, however, based on emerging data on long-term outcomes of sustained treatment that appears to be making a difference.

MultipleSclerosis.com: So you wouldn't recommend that someone who is on treatment stop therapy, even if their condition fits the definition of benign MS?

Dr. Rivera: We continue the treatment because evidence shows that the longer the patient is on medication, the less opportunity for an attack or relapse. And this is a follow-up of 16 years with interferon beta-1b and more than 10 years with glatiramer acetate. According to the statistics, the longer the person stays on the treatment, the less the possibility of relapses, implying the decreased risk of disability.

But this is a very unpredictable disease. Unfortunately, if the person has a breakthrough attack, we tell the person to not get discouraged. The medications are probably still working since all approved medications might not work at a hundred percent for all patients. We usually treat the relapse with steroids, either intravenously (into the vein) or by mouth.

If the patient continues to have continued relapses, then we consider this as a possible sub-optimal response and we might consider switching to another therapy or adding another treatment.

MultipleSclerosis.com: How would you determine which medication you would switch to?

Dr. Rivera: If the person is not doing well on low-dose interferon (Avonex), the tendency would be to switch to a high-dose interferon (Betaseron, Rebif). If the patient is not doing well on glatiramer acetate (Copaxone), we switch to low- or high-doses interferon. If the person is on high-dose interferon and is relapsing, the disease may be developing into secondary-progressive MS. In that case, we decide if we use some sort of combination therapy or some sort of chemotherapy.

MultipleSclerosis.com: Going back to the question of benign MS – why do some neurologists view this diagnosis as controversial?

Dr. Rivera: Evidence shows that the earlier MS is treated with one of the disease-modifying therapies, the better the outcome. Benign MS can be a very dangerous diagnosis because doctors – even neurologists who treat MS – may not know for sure that it is benign until years later. Also, damage could be occurring in the brain even when a person is not experiencing symptoms. People with MS might miss out on treatments that could help them a great deal.

DIET AND SUPPLEMENTS IN MS: REASONABLE APPROACH
Allen C. Bowling, MD, PhD in MultipleSclerosis.com

In some respects, the role of diet and dietary supplements in multiple sclerosis (MS) is controversial. The most conservative, mainstream approach purports that, because the evidence is inconclusive, dietary strategies should not play a significant part in MS treatment plans. At the other end of the spectrum, some have claimed that a particular diet or supplement can cure the disease.

"Both views are overstated and are not helpful to people with MS," says Allen C. Bowling, MD, PhD, Associate Medical Director at the Rocky Mountain Multiple Sclerosis Center in Englewood, Colorado and an authority on alternative medical approaches to MS.

"For those who prefer to use only absolutely proven treatment, there is no diet or supplement to use. For people interested in low-risk, possibly effective dietary strategies, there are few options," he adds. "Such

Fatty fish is probably the best food source from which to obtain omega-3 fatty acids; this includes Atlantic herring, Atlantic mackerel, bluefin tuna, sardines, and cod. Flaxseeds, walnuts, and eggs also contain omega-3 fatty acids.

"There is some evidence that increasing polyunsaturated fats and decreasing saturated fats mildly suppresses the immune system," Dr. Bowling says. "In theory, that should be helpful in MS because the disease involves an immune system that is overactive in specific ways." Also, evidence obtained from population studies shows that MS is less common in countries where dietary intake of omega-3 acids is relatively high.

"Although no single study of omega-3 fatty acids conclusively demonstrates a favorable effect in MS, the body of evidence, considered as a whole, is quite suggestive," he adds.

Vitamin D and Calcium: A recent women's health study indicated that supplemental calcium decreased the risk of developing MS. In addition, several recent studies have linked deficiencies in vitamin D to a higher risk of MS. The incidence of MS appears to increase with latitude, or distance from the equator, notes Dr. Bowling. Sunlight is needed to convert a precursor to the biologically active form of vitamin D. It has been theorized that populations living in areas where there is a low exposure to sunlight are prone to vitamin D deficiencies and hence to higher incidences of MS.

"In terms of treatment, however, vitamin D has never been studied rigorously among people with MS in a direct way," says Dr. Bowling.

Regardless of its possible role in treating MS, vitamin D, along with calcium, is recommended for the treatment and prevention of osteoporosis (loss of bone mass which makes bones susceptible to breaking). People with MS have an increased risk of osteoporosis because immobility, lack of weight-bearing activities due to fatigue, and corticosteroid use increase the risk, explains Ms. Coutris. The recommended daily calcium intake for adults is between 1,000 and 1,200 mg. The recommended daily intake of vitamin D is 400 international units (IU), but recent studies suggest it should be higher. However, at high doses, vitamin

Proper Nutrition is Key. The main point when discussing dietary approaches, however, says Nancy Caldis-Coutris, RD, a clinical dietitian with the Multiple Sclerosis Clinic at the Winnipeg Health Sciences Center in Canada, is to realize that nutrition alone is not an alternative approach. "Nutrition plays an integral role in maintaining good health as well as preventing and treating many of the secondary complications of MS," Ms. Coutris says.

"There is no magic diet that will cure this disease," she adds. "The most important advice I offer people with MS is to follow a balanced diet. People with MS commonly experience secondary complications associated with the disease, such as fatigue, changes in mobility, changes in bowel habits, or difficulty swallowing," she notes. "Nutrition intervention is a critical component to the treatment and prevention of these complications."

Good and Bad Fats: A study conducted many years ago by Roy Swank, MD, suggested that decreasing saturated fats improves outcomes in MS. The "Swank diet" severely restricts fats and increases polyunsaturated fats. "Dr. Swank's study was long-lasting, but poorly designed by today's standards," Dr. Bowling comments. As of yet, he adds, "no well-designed clinical trial has considered whether decreasing dietary sources of saturated fats improves outcomes in MS." However, there is some basis to the reasoning that limiting saturated fats can be beneficial in MS. Saturated fats are solid at room temperature and are generally found in animal source such as meat, diary, and eggs. They are also found in coconut oil and palm kernel oil.

Polyunsaturated fats (omega-3 and omega-6) may be more beneficial than saturated fats. "The reason these fats are so important is because they are considered essential, which means that the body cannot synthesize them. We therefore must obtain them from the diet," Ms. Coutris explains. According to Dr. Bowling, because the average American diet is relatively high in omega-6 fatty acids and low in omega 3 fatty acids, the most reasonable strategy for improving one's health may be to increase omega-3 intake.

D can be toxic. The upper limit of vitamin D, or the highest dose at which it is thought to be safe, is currently set at 2,000 IU. Dietary sources of calcium include low-fat diary products, fish, almonds, and certain types of beans.

Are There Any Risks? People with MS should consult with their health care provider before taking any supplements or drastically modifying their diets. In addition, they should be sure to find out about any possible warnings or side effects, stresses Dr. Bowling. Increased polyunsaturated fat intake, for instance, may increase the risk of bleeding in people with bleeding disorders or in those taking blood-thinning medications.

These fats may also deplete vitamin E, warns Dr. Bowling. He recommends that people supplementing with fish oils or other polyunsaturated fats slightly increase their vitamin E intake.

And some supplements may be harmful for people with MS. "Supplements that are known to stimulate the immune system may, theoretically, be harmful, especially in high doses or when used for extended periods of time. These include vitamins A, C, and E, and herbs such as Echinacea, ginseng, and alfalfa, among others.

"Although it is possible that some of these supplements may be harmless, or may even offer some benefits, none have ever been carefully studied in people with MS to assess safety," he points out

News | Information / Subscriptions
Programs | Smile | Archive |Contact Us

FortNet Home

*This material is provided as general medical information and is not intended as advice for individual patients;
please contact your physician for specific recommendations.

Web site design by Mes Bijoux Ltd