Thursday, December 31, 2009

Innovation & Technology December 30, 2009, 10:28AM EST

Multiple Sclerosis: A Breakthrough Is on the Way

A number of improved treatments will be available soon, and Novartis' Fingolimod could lead the way

When Thomas Bullock was diagnosed with multiple sclerosis in 2001, several new treatments for the incurable, nerve-destroying condition had just hit the market. The automotive worker from Ontario spent two years on Bayer's blockbuster Betaseron, an injectable drug that can suppress a hyperactive immune system. But instead of getting better, Bullock endured constant flu-like symptoms and numbness in his limbs. When he developed severe nerve damage, he ditched the injections. "My body just couldn't handle it," recalls Bullock, now 41.

Then, in 2007, he joined a clinical trial for an experimental pill, Fingolimod, from Novartis (NVS). His MS hasn't flared up since. "This is the best shape I've been in for years," he says.

Bullock is one of an estimated 2.5 million MS patients worldwide with fresh cause for hope. Fingolimod and a slew of other drugs that attack MS in new ways are expected to become available starting in 2010. With 10 treatments in late-stage development and more than two dozen in early-stage research, some doctors believe therapy for the illness is at a turning point. Although doctors can't say which drugs will succeed, "we are getting closer to stopping the progression of the disease," says Dr. John Richert, a top executive at the National Multiple Sclerosis Society.

Switzerland's Novartis is vying with Germany's Merck to be first with an oral treatment, pursued closely by France's Sanofi-Aventis (SNY), Israel's Teva Pharmaceuticals (TEVA), and Biogen Idec (BIIB) in Cambridge, Mass. If regulators approve any or all of these products, the painful injections and infusions patients endure today may become obsolete—and the global market for MS drugs, currently at $8.8 billion, could double within five years, according to consultants Frost & Sullivan.

When MS strikes, rogue immune cells travel to the brain and spine, attacking and destroying myelin, the protective insulation surrounding nerves. These mysterious attacks produce sclerotic scar tissue and disrupt messages from the brain that control muscle movements, with symptoms ranging from mild numbness to paralysis and blindness.

MS drugs seek to quell these assaults. But any tampering with the body's immune reactions can be dangerous. "There is balance between treating the disease and potentially increasing the risk of infection and cancer," says Dr. Jeffrey Cohen, director of experimental therapeutics at the Cleveland Clinic's Mellen Multiple Sclerosis Center. Consider Tysabri, one of the most potent weapons against MS, which works by confining wayward immune cells in the bloodstream. The drug, made by Biogen Idec and Elan Pharmaceuticals (ELN), has been used by 65,000 patients. Of these, 28 have developed brain infections, and 7 have died.

The new wave of MS drugs face tough scrutiny. Fingolimod, for one, works through an entirely new mechanism: It traps the marauding immune cells in the lymph nodes, keeping them from entering the bloodstream. A two-year study shows it reduced the relapse rate in MS patients by 54%. It also may increase the nervous system's ability to protect itself, as may Biogen Idec's new pill, BG-12, says Richert.

What doctors can't guarantee is that the drugs will suppress the illness without triggering infections. "We desperately need new drugs for MS," says Dr. Mark Keegan, section chair of multiple sclerosis at the Mayo Clinic in Rochester, but "any new medication that alters the immune system needs to be used with caution."

Capell is a senior writer in BusinessWeek's London bureau .

Sunday, December 20, 2009

Wednesday, December 16, 2009

Happy Holidays to All

Canada has one of the highest rates of MS in the world… three new people are diagnosed with MS in our country every day. That is why we are working so hard this holiday season to give new hope to the estimated 55,000 to 75,000 Canadians living with MS.

You can make the season more meaningful with a gift to the MS Society of Canada.

Why not give a gift in Honor or Memory of someone.

Click here to find out more and how to give.

Monday, December 14, 2009

The latest from the MSRC

Tuesday, December 1, 2009

Found this blog on line. Interesting.You should read the whole article. by Wheelchair Kamihaze

Monday, November 30, 2009

CCSVI (the Vascular Theory of MS): Separating Fact from Fiction

Veins of the head and neck.

Since the airing of a Canadian television newsmagazine piece on CCSVI, there has been a veritable frenzy on Internet chat rooms and bulletin boards regarding this radical new theory. Unfortunately, the tsunami of information that is being bandied about is often misleading and sometimes just plain wrong. Based on scant knowledge, many are making extraordinary claims regarding the theory and the treatment options it presents, most of them based on little actual fact.

For those unfamiliar with CCSVI (chronic cerebrospinal venous insufficiency), I've made two previous posts about it, which you can find here and here. I've been fastidiously following the development of the theory and the treatments being used as a result of it for at least ten months now. Though I'm far from the be-all and end-all of CCSVI information, I do feel qualified to make some intelligent observations about it.

For readers unacquainted with CCSVI, the theory basically states that narrowing in the veins that drain the central nervous system (CNS) lead to an abnormal flow of blood through the CNS, which damages nerve tissue via several different mechanisms, and leads to the lesions and immune responses that are the hallmarks of Multiple Sclerosis. First proposed by an Italian doctor, Dr. Paolo Zamboni, whose wife was stricken with MS, the theory has won over several fervent supporters. Dr. Zamboni is treating MS patients with a modified balloon angioplasty procedure he calls "The Liberation Procedure", and another physician at Stanford University is opening up the blocked veins of MS patients using stents. There is also a doctor in Poland who appears to be using a combination of these two methodologies. As knowledge of the theory has spread, many harsh critics have quite expectantly begun to ring in. I'll attempt here to cut through the noise, and present the facts as I know them, along with some commentary.

To begin with, let me state that although I remain somewhat skeptical, I'm a cautious believer in the concepts put forth by the CCSVI theory. It is certainly my hope that the theory bears fruit, as it will offer MS patients a myriad of new options to treat the disease, and will lead research scientists in entirely new directions as they investigate the many aspects of Multiple Sclerosis. Hopefully, it will help bring about a rethinking of the autoimmune theory of MS, which states that, for reasons unknown, the immune system goes bonkers and starts attacking the body's own cells. Quite frankly, we've been fed that line of bullshit for far too long. If the CCSVI theory starts gaining significant traction, expect a withering storm of criticism to come from some mainstream neurologic circles, as well as from the pharmaceutical industry, which stands to lose untold billions in the sales of drugs designed to suppress the immune system.

Dr. Zamboni's research began with his imaging the vascular systems of MS patients, sufferers of other neurologic diseases, and healthy subjects. He reports that he found signs of vascular blockage in almost 100% of the MS patients he studied, but none in either the patients with other neurologic diseases, or the healthy subjects. On its face, this would seem to be very compelling evidence. However, as my doctors at the National Institutes of Health (NIH) have pointedly explained, this claim throws up some big red flags. Because MS is a notoriously hard disease to diagnose, and there are many diseases that mimic MS, in any large population of diagnosed MS patients, there will be a significant segment that have in fact been misdiagnosed. Therefore, finding 100% of practically any trait among a large population of MS patients is practically impossible. As a matter of fact, the way I first became involved with the NIH was as part of a study being used to identify patients that the National Institutes of Health could be certain actually suffer from MS, because misdiagnosed patients were skewing the results of many of the MS studies they had undertaken. The NIH is trying to identify a pool of patients they can be confident actually have MS, for use in future studies. This is how the NIH ascertained that it's very likely I do not have MS.

Still, the Zamboni findings appear to be compelling. Before they can be accepted as scientific fact, though, they must be replicated by independent researchers, and so far, no such evidence has been presented. There are several different research groups currently putting together studies of CCSVI, and a large imaging study is already ongoing at the University of Buffalo, so we should have either independent verification or refutation of the theory sometime within the next 6 to 12 months. Before we get these independent reports, however, it is extremely premature to state anything of certainty about the theory.

In my mind, the theory could explain several of the mysteries surrounding MS, but fails to explain many others. It's one of the first theories to adequately explain the formation of lesions and the immune response that are the calling cards of MS. It also explains findings such as those that tie cigarette smoking to an increased incidence of MS and a quicker progression of the disease. Since smoking is known to exacerbate vascular issues, if MS is in fact a vascular disease, it stands to reason that smoking would have a considerable negative effect on it.

On the other hand, the theory does not address what we know about the geographic distribution of MS, the male-female ratio that is well known to exist in MS, the existence of "MS clusters" (which would seem to point to an infectious cause), or the unmistakable link between MS and Epstein-Barr virus (100% of MS patients are infected with EBV. I know, many of you reading this have never had Mono, but the vast majority of people infected with EBV have no idea that they carry the virus. It can often be asymptomatic, or present as a bad cold or flu).

Having said that, MS is an extremely heterogeneous disease, and it may be that CCSVI is THE answer for a subset of MS patients, but may play only a partial role, or no role whatsoever in others diagnosed with the Multiple Sclerosis.

As for the surgical interventions now being used on patients whose imaging (via MRV and/or Doppler imaging studies) indicates that they have venous abnormalities related to the CNS, there are controversies surrounding these, as well. The problems stem from the fact that the procedures being used were all developed for use in clearing out the obstructed arteries of cardiac patients. Remember, CCSVI is concerned exclusively with veins.

There are major differences between arteries and veins, both in form and function. Arteries are designed to facilitate the outflow of blood from the heart to the various organs and regions of the body. They must be able to withstand the tremendous internal blood flow pressures generated by the beating heart, and thus their walls are stiff and resistant to tears and breaks. Veins, on the other hand, function to return deoxygenated blood to the lungs and heart. They are designed to be flexible and pliant, and their walls are much thinner and more prone to tearing than the walls of arteries. Arteries grown narrower in the direction of blood flow, while the opposite is true of veins, which grow wider as they return blood to the cardiopulmonary system. Therefore, a stent that gets loose in an artery is typically only pushed deeper into that artery. A stent that gets loose in a vein generally has a clear path to the heart.

In self-reported results, Dr. Zamboni's balloon angioplasty Liberation Procedure appears to be quite effective in reducing relapse rates and disease severity. Unfortunately, as many as 50% of the patients treated suffer restenosis of the veins opened by the Liberation Procedure, and thus require multiple interventions. As with any surgery, there is risk involved, and that risk is multiplied each time the intervention must be repeated. Furthermore, stenosis that is found in problematic areas, such as high in the jugulars, is not treatable by balloon angioplasty.

The surgery being attempted at Stanford University is much more aggressive, and places stents at the stenosed areas of blockage. Stenting has very rarely been tried in veins, and much less so in veins associated with the brain and spinal cord; the stents used have been almost exclusively designed for use in arteries. So far, slightly over 60 patients have been treated with this procedure, and there have been some serious complications reported. Despite the fact that I have a significant stenosis in my left upper internal jugular, both the doctors at the National Institutes of Health and my primary neurologist have repeatedly and adamantly warned me against undergoing this procedure, citing the possibilities of brainstem hemorrhages, stent migration (which would almost inevitably lead to stents finding their way into the heart), and the ever present danger of bleeding and blood clots. Although the majority of the patients that have undergone this procedure report positive results, a minority have had a difficult time recovering from surgery, and have reported nerve pain and nerve damage. There have also been reports of much more serious complications.

In short, the research surrounding CCSVI appears to be very promising. Until this research is replicated by independent organizations, no real conclusions can be drawn. There have been many other promising leads in the history of MS research that have eventually led to dead ends. I'm hopeful that CCSVI will not be one of them, and instead will lead to a seismic shift in our understanding of not only MS, but other so-called autoimmune diseases as well. I cannot make any such statement, however, until the research is verified by multiple sources. As for the surgical procedures now being offered to treat stenosed veins, they must be characterized as experimental, and as such, carry with them a sizable degree of risk, more so with the stenting procedure than with balloon angioplasty. If CCSVI theory turns in to CCSVI fact, these surgical procedures will in time be refined, and the risk in undergoing them diminished.

I found this fascinating quote today:

As exciting as Dr. Zamboni's research is, I think it's important that the MS community as a whole steps back and takes a breath, and waits to see what further research bears out. I understand how hard this can be with a progressive neurologic disorder breathing down your neck. Believe me, I'm nearing the point of desperation myself, but in situations like these, we cannot let hope and emotion cloud our actions and understanding of the issues. These are potentially life and death matters, and need to be approached with clarity of mind and a complete grasp of the complicated issues at hand.The Wheelchair Kamikaze, Wheelchair Kamikaze, Nov 2009

Thursday, November 26, 2009

Dr. Zamboni's CCSVI Doppler Demonstration

Tuesday, November 24, 2009

Overview and FAQ *UPDATED

Watch these 2 videos on CCSVI in MS

MS Society of Canada announces request for research operating grants related to CCSVI and MS

Toronto, ON – November 23, 2009 – The Multiple Sclerosis Society of Canada announced it will request research operating grants related to chronic cerebrospinal venous insufficiency (CCSVI) and MS.

A recent study released by Dr. Paulo Zamboni, University of Ferrara, Italy, describes CCSVI as a disruption of blood flow in which the venous system is not able to efficiently remove blood from the central nervous system resulting in increased pressure in the veins of the brain and spinal cord which in turn results in damage to these areas.

“These early results are encouraging and show that this warrants more study,” said Yves Savoie, MS Society President and CEO. “This is truly a new avenue to explore in MS research, and we want to be a part of furthering this investigation.”

The MS Society of Canada will issue an invitation for research operating grant proposals on CCSVI related to multiple sclerosis from qualified investigators based in Canadian institutions. Proposals will be evaluated for their scientific merit and relevance to the field of MS.
The competition will open on December 9, 2009, and the deadline for applications will be January 22, 2010.

“There has been tremendous interest and excitement about this study from people with MS, supporters, volunteers and staff across the country. While we acknowledge that the concept of CCSVI as a cause of MS needs to be replicated and validated in larger well-designed studies, the Society looks forward to contributing to this body of work,” said Savoie.

While excited about the potential of the CCSVI study, the findings are preliminary. Thus the MS Society advises that while further research is underway people follow their physician's recommendations and continue their current course of therapies.

About multiple sclerosis and the Multiple Sclerosis Society of Canada Multiple sclerosis is a chronic, often disabling disease of the brain and spinal cord. It is the most common neurological disease of young adults in Canada. Most people with MS are diagnosed between the ages of 15 and 40, and the unpredictable effects of MS last for the rest of their lives.

The Multiple Sclerosis Society of Canada is the only national volunteer health agency in Canada that funds MS research, provides services for people with MS and family members and conducts public education programs. Since its founding in 1948, the MS Society has worked to hasten the discovery of the cause, effective treatment and cure for MS. From basic laboratory
research to the development of new treatments for people with MS, the MS Society’s research program is making a difference in people’s lives today.

The MS Society also provides services to people who have multiple sclerosis and family members through its seven division offices and more than 120 chapters. MS Society volunteers and staff are also actively involved in educating health care professionals about MS and its treatment, in public awareness programs and in government relations and advocacy.

Contact Information:
Stewart Wong
National Senior Manager, Media and Public Relations
Multiple Sclerosis Society of Canada
Telephone: 416-967-3025

Multiple Sclerosis Society of Canada
Toll free to reach the nearest regional office: 1 800 268-7582

Friday, November 13, 2009

This is a wonderful video of the many faces of MS...

Friday, October 23, 2009

HOME SAFETY - by Susan Dorne, OT
One of the biggest concerns I have as a health care professional is the safety of people. It’s amazing how many barriers are around us, many of which we are not aware of. For people without deficits, they can usually maneuver around obstacles with little or no harm or even thought for that matter. However, when you have MS and your vision, mobility, balance, strength, endurance, and sensation may be affected, consequences are often inevitable. It never ceases to amaze me when people reply “I Know But…” when I try to address potential safety risks and make recommendations.
To begin with, get rid of throw and area rugs as they are a significant safety hazard and one of the biggest causes of falls. It is best to use skid resistant rugs and mats to avoid the rug from sliding or folding over. Flooring can be tricky. Tiles can be slippery while rugs can make mobility difficult. Challenges with rugs can occur when you have weakness in the legs or feet, fatigue, limited endurance and use of different mobility aides (such as a cane, rolling walker and a
wheelchair when you have to push yourself). Choose flooring that best suits your needs and don’t be discouraged if you have to change it later on. No matter what, you always want to be aware of the surface you are walking on in and outside the home.
Rooms should be clutter free. Arrange furniture so that it is easy to move around safely and take into consideration any walking devices or wheelchairs/scooters used. Move cords so they are not in the way and make sure there is easy access to good lighting at all times. Use night lights for areas you go to regularly especially the bedroom, bathroom and hallways.
Couches, chairs and beds should be at a proper height to get into and out of easily. These surfaces should be at height equal to the back of your knees (use cushions or pillows to raise the surface), chairs with arm rests are easier to use, and avoid wheels whenever possible. Beds can be against the wall to serve as a protective barrier if there is a risk of falling off the bed during sleep. A side rail can be used for the open side if need be. If you use a wheelchair, you will need 4 ½ feet on one side of the bed for access.
A common place for falls is the bathroom. Grab bars are used to maintain balance in tubs, showers and by commodes/toilets. They come in various shapes, sizes, and colors and I strongly suggest having them installed by a licensed and insured company or individual. Towel racks and soap dishes are
not intended to be used as a supportive device as they are slippery
and can easily break from the wall. There are also portable grab bars (attached by rubber suction) to use for stability in other places and rooms, if you’re renting, or to take when traveling.
Shower chairs and tub benches are used to help with limitations in standing, mobility, and fatigue. If a tub bench is required, you will need to remove shower doors and install a shower curtain. Whenever a shower curtain is used, make sure the shower rod is bolted or screwed into the wall and the clips attaching the curtain to the rod are sturdy. A hand held shower hose provides easier showering. Non-skid mats and strips are used inside tubs and showers as well as outside for drying off.
Sensory deficits are important to be aware of and to take proper precautions. Set your water heater thermostat to 110 degrees or lower to help prevent scalding. It is best to test water temperature by touch and if you are experiencing numbness, I encourage you to purchase a water thermometer.
In addition, proper care must be taken while cooking. Be aware as handles get hot, food splatters, oven racks and sides get extremely hot as well as all baking and cookware. Eliminate or minimize use of sharp objects (this is important for visual deficits and hand weakness as well). Some examples include: purchase pre cut foods to minimize using knives; use electric razors, and use blunt scissors instead of sharp ones (if you must use them at all).
Another issue I want to emphasize is the importance of using an assistive device if you are advised to use one. Walls, furniture and counter tops do not count as assistive devices so stop using them! Do not get a walking aide and use it without proper assessment, sizing and instruction from a therapist.
The information provided are just some examples of how you can have a safe environment at home. An occupational therapist (OT) can do a full home evaluation where suggestions and training will be made based specifically on your needs.
If you’re ever in doubt whether you can or should do something, wait until you have another person is available. It’s important to always ask assistance whenever possible regardless of the situation and don’t be afraid or embarrassed to do so.
Link to article:
Gentle Touch May Aid Multiple Sclerosis Patients

While gripping, lifting or manipulating an object such as drinking from a cup or placing a book on a shelf is usually easy for most, it can be challenging for those with neurological diseases such as multiple sclerosis or Parkinson's, or for people who had a stroke. For them, the tight gripping can cause fatigue, making everyday tasks difficult.
A team of University of Illinois at Chicago physical therapists report this month in the journal
Neurorehabilitation and Neural Repair that persons with multiple sclerosis use excessive force when they are lifting objects.
In an earlier finding reported in the journal Clinical Neurophysiology, they reported that regaining control and coordination may be as easy as applying a gentle touch to the affected hand from a finger of the opposite hand.
"We studied how this light touch application changes the way people apply force to an object they want to grip," said Alexander Aruin, professor of physical therapy.
The study compared eight adults with multiple sclerosis to eight without the disease, gender-matched and of comparable age. "In each case, the grip force required to lift an object decreased," said Aruin.
He found similar results in an earlier study he did of people with arm weakness caused by a stroke.
Why the simple light finger touch application works so well is not fully understood, but Aruin offers a hypothesis.
"It could be due to auxiliary sensory information from the contra-lateral arm," he said. "When we use our second hand and touch the wrist of the target hand, available information to the central nervous system about the hand-object interaction may increase. Without the touch, the information needed to manipulate an object comes only through vision and sensory input from just the target arm and hand."
Aruin and his colleagues tested subjects griping and lifting a variety of objects that they moved in several different ways, directions and velocities. The gentle finger touch always helped to reduce grip force, making the task easier.
The UIC researcher said he and his colleagues plan to test the approach on those with other
neurological and muscular diseases to examine the effects.
"We look forward to developing training and rehabilitation procedures on how to use this," said Aruin.
"We know that MS patients are prone to fatigue and muscle weakness. This finding may enable them to perform daily activities more independently to improve their quality of life."
The papers' lead author was Veena Iyengar, a former master's student of Aruin's now at Advocate Lutheran General Hospital in Park Ridge, Ill. Other authors were Marcio Santos, a former UIC postdoctoral fellow now at Santa Catarina State University in Brazil, and Michael Ko, a neurologist with Loyola University Chicago's medical center.
The research was supported by a grant from the National Multiple Sclerosis Society.
Source: University of Illinois at Chicago
Article URL:

Multiple Sclerosis: Controlling Muscle Spasms

Many people with MS experience spasticity, or muscle stiffness and spasms. It usually affects the muscles of the legs and arms, and may interfere with the ability to move those muscles freely.

Spasticity can occur either as a sustained stiffness caused by increased muscle tone or as spasms that come and go, especially at night. It can feel like a muscle tightening or it can cause severe pain. Spasticity can also produce feelings of pain or tightness in and around joints and can cause low back pain. The intensity may vary depending on your position, posture, and state of relaxation.

What Causes Spasticity?

Spasticity is the result of an imbalance in the electrical signals coming from the brain and spinal cord, often caused by damage to these areas from by MS. This imbalance causes hyperactive muscle stretch reflexes, which result in involuntary contractions of the muscle, and increased muscle tension.

What Triggers Spasticity?

Spasticity may be aggravated by extremes of temperature, humidity, or infections. It can even be triggered by tight clothing.

How Is Spasticity Diagnosed?

To diagnose spasticity your doctor will first evaluate your medical history, including what medications you have taken and whether there is a history of neurological or muscular disorders in your family. To confirm the diagnosis, several tests can be performed to evaluate your arm and leg movements, muscular activity, passive and active range of motion, and ability to perform self-care activities.

How Is Spasticity Treated?

Spasticity can be treated using physical therapy, medications, surgery or any combination of these treatments. Your doctors will consider the severity of your condition, your overall health, and the following factors when prescribing an appropriate treatment plan:

  • Is the spasticity affecting function or independence?
  • Is the spasticity painful?
  • What treatment options have already been tried, and how did they work?
  • What are the costs of the possible treatments?
  • What are the limitations and side effects of the treatment?
  • Will the benefits outweigh the risks?

How Does Physical and Occupational Therapy Help Spasticity?

A basic physical therapy stretching program is the first step in treating spasticity. A daily regimen of stretching can lengthen muscles to help decrease spasticity.

An occupational therapist may prescribe splinting, casting, and bracing techniques to maintain range of motion and flexibility.

If physical and occupational therapy do not adequately control the spasticity, medications may be added to the treatment plan.

What Medications Are Used to Treat Spasticity?

Common medications used to treat spasticity include the muscle relaxants baclofen and Zanaflex.

Another drug that might be used to treat spasticity is Valium, which is often helpful when taken at night to relieve spasms that interfere with sleep.

If medications taken orally are not effective, a pump can be surgically implanted to deliver the medication (such as the baclofen pump). Botulinum toxin (or Botox) can also be injected locally into the affected area to relax the muscles.
What Types of Surgery Are Available?
When other treatments fail, rhizotomy and tendon release are two surgical procedures used to treat spasticity.
Rhizotomy involves surgically cutting away part of the spinal nerve. It is performed to relieve pain or decrease muscle tension.
Tendon release, also called a tenotomy, may be performed to help reduce the frequency or magnitude of the spasticity,
depending on the age of the patient. The surgery involves cutting severely contracted tendons away from the muscles to which
they're attached.
Tendon release may need to be repeated.
These surgeries are usually only done in extreme cases that do not respond to other treatments.
Article Link:

Thursday, October 15, 2009

(WBFO) - UB Neurologists are ready to investigate the possible underlying cause of Multiple Sclerosis.
(Listen to the audio report featuring Dr. Robert Zivandinov)

Click the audio player AT THIS LINK to hear Eileen Buckley's full story now or use your podcasting software to download it to your computer or iPod.

An Italian researcher has uncovered a new clue in the search for the cause of MS. It is the discovery of a narrowing of the primary veins outside of the skull. It restricts normal blood flow to the brain resulting in a vascular condition found in MS patients. Now UB is ready to dig into this research. Dr. Robert Zivadinov is an associate professor of Neurology.

A study is already underway in Buffalo. Dr. Murali Ramanathan, associate professor of Pharmaceutical Sciences at UB, says they want to replicate the findings from Italy.

© Copyright 2009, WBFO

Multiple Sclerosis: Understanding the Differences in MS

In some ways, each person with multiple sclerosis lives with a different illness. Although nerve damage is always involved, the pattern is unique for each individual who has MS.

Although individual experiences with MS vary widely, physicians and researchers have identified several major types of MS. The categories are important. That’s because they help predict disease severity -- and response to treatment.

Primary progressive multiple sclerosis

In primary progressive MS, symptoms continually worsen from the time of diagnosis. There are no well-defined attacks. And there is little or no recovery. Between 10% and 15% of people with multiple sclerosis have primary progressive MS.

Several aspects of primary progressive MS distinguish it from other types of MS:

  • People with primary progressive MS are usually older at the time of diagnosis -- an average age of 40.
  • Roughly equal numbers of men and women develop primary progressive MS. In other types of MS, women outnumber men three to one.
  • Primary progressive MS usually leads to disability earlier than relapsing-remitting MS (see below).
  • Perhaps the most upsetting difference in primary progressive MS is its poor response to treatment. So far, no treatments have been shown to help, although studies are ongoing.

Relapsing-remitting multiple sclerosis

Most people with multiple sclerosis -- around 90% -- have the relapsing-remitting type. Symptoms first affect most people in their early 20s. After that, there are periodic attacks (relapses), followed by partial or complete recovery (remissions).

The pattern of nerves affected, severity of attacks, degree of recovery, and time between relapses all vary widely from person to person.

Eventually, most people with relapsing-remitting MS will enter a secondary progressive phase of MS.

Secondary progressive multiple sclerosis

After living with relapsing-remitting MS for many years, most people will develop secondary progressive MS. In this type of MS, symptoms begin a steady march, without relapses or remissions. (In this way, secondary progressive MS is like primary progressive MS.) The transition typically occurs between 10 and 20 years after the diagnosis of relapsing-remitting MS.

It’s unclear why the disease makes the transformation from relapsing-remitting to secondary progressive MS. A few things are known about the process:

  • The older a person is at original diagnosis, the shorter the time for the disease to become secondary progressive.
  • People with incomplete recovery from initial relapses generally convert to secondary progressive MS sooner than those who recover completely.
  • The process of ongoing nerve damage changes. After the transformation, there’s less inflammation, and more slow degeneration of nerves.

Secondary progressive MS is challenging to treat -- and to live with. Treatments are moderately effective at best. Progression occurs at a different rate in each person and generally leads to some disability.

Progressive relapsing multiple sclerosis

Progressive relapsing multiple sclerosis is the least common form of multiple sclerosis. Relapses or attacks occur periodically. However, symptoms continue and are progressive in between relapses.

Progressive relapsing MS is rare enough that little is known about it. Probably around 5% of people with multiple sclerosis have this form. Progressive relapsing MS seems to be similar to primary progressive MS in many ways.

What causes MS?

No one knows what causes multiple sclerosis. Tantalizing clues have sparked research in many areas, but no definite answers. Some theories have included:

  • Geography. People in the northern U.S. develop MS more often than those in the warmer south. Research into vitamin D and sunlight as protective factors is ongoing.
  • Smoking. Tobacco may increase the risk slightly. But it’s not the whole story.
  • Genetics. Genes do play a role. If an identical twin has MS, the other twin has a 20% to 40% chance of developing it as well. Siblings have a 3% to 5% chance if a brother or sister is affected.
  • Vaccines. Extensive research has essentially ruled out vaccines as a cause of MS.

Multiple sclerosis is probably an autoimmune disease. Like lupus or rheumatoid arthritis, the body creates antibodies against itself, causing damage. In MS, the damage occurs in the lining, or myelin, of nerves.

How is multiple sclerosis diagnosed?

Multiple sclerosis is generally diagnosed after a person has experienced troublesome symptoms related to nerve damage. Vision loss, weakness, and loss of sensation are common complaints.

The most common tests used to diagnose MS are scans of the brain and spinal cord with magnetic resonance imaging (MRI) and lumbar puncture or spinal tap.

Unfortunately, the time between the first appearance of symptoms and diagnosis of MS can be prolonged. Studies show that because symptoms are often low-grade or vague, doctors may miss the diagnosis.

Even when symptoms are definitely consistent with MS, the diagnosis still can’t be made right away. This is because, by definition, multiple sclerosis is a long-term illness. After the first symptoms, there’s an often frightening and frustrating period of waiting until more symptoms occur and the diagnosis becomes clear.