In recent news, a few days ago The National MS Society (USA) and The MS Society of Canada committed to over $2.4 Million to support 7 different research grants whose focus are to determine the role of CCSVI in the MS disease process.

These studies will achieve some important goals.  First, they will carry out the steps needed to confirm the phenomenon originally described by Dr. Paolo Zamboni as to whether CCSVI is a cause of MS or related to MS in some other manner. Second, these studies will resolve conflicting data from previous research, such as how frequently CCSVI occurs in MS, and how often it occurs in people who do not have MS. Third, if blockages are found, the findings will speed the way to determining whether therapeutic trials to correct them will be helpful in improving or altering MS disease process.

The funded teams, which include an integration of MS and vascular experts, are led by:

• Dr. Brenda Banwell, The Hospital for Sick Children, Toronto, Ontario Read details

• Dr. Fiona Costello, Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta Read details

• Dr. Aaron Field, University of Wisconsin School of Medicine and Public Health, Madison Read details

• Dr. Robert Fox Cleveland Clinic, Cleveland Read details

• Dr. Carlos Torres, The Ottawa Hospital, University of Ottawa, Ontario Read details

• Dr. Anthony Traboulsee, UBC Hospital MS Clinic, UBC Faculty of Medicine and Dr. Katherine Knox, Saskatoon MS Clinic, University of Saskatchewan Read details

• Dr. Jerry Wolinsky, University of Texas Health Science Center at Houston Read details

It’s exciting to see so much research being done!  I’ll try to keep up with studies as they progress and post any results or news.

Cladribine

Currently, all disease-modifying therapy is administered through injection. An infusion, Tysabri, is also available, but it also requires being injected with a needle. It is a blessing that such treatments exist, however, oral medication would positively impact MS patients’ daily routines, outlooks, and prospects. Two such medications, cladribine and fingolimod, are entering Phase III trials right now.

Oral cladribine, a new product being tested by the drug company Serono, is in the midst of a two-year, placebo-controlled trial. This study, called CLARITY, can be found in such states as Colorado, Georgia, Maryland, Oklahoma, North Carolina, New Jersey, and Oregon. Certain states are still recruiting for this study. Apparently, oral cladribine has been tagged as a “Fast Track Product”, which means its future FDA review (at the end of Phase III) will be expedited, giving multiple sclerosis patients a speedy new oral option for treatment.

Fingolimod

Oral fingolimod, another potential MS medication, also looks promising, and is also entering Phase III, which is the last step before FDA approval or rejection in the United States. Conversely, oral fingolimod seems to have some side-effects that need to be worked out. Presently, these include nausea, inflammation of the nasal passages, breathing difficulties, and/or reduction in heart rate. The drug company responsible, Novartis, is working on this. The study being being performed is names FREEDOMS and is still recruiting.

Dr. Paolo Zamboni, a vascular surgeon and professor at the University of Ferrara in northern Itally, began in intense search for the cause of MS when he could no longer bear to watch his wife suffer with the disease.  After much research, he discovered a major correlation between excess iron buildup around the brain lesion of MS patients and narrowing, twisting, or blockage of the veins that flush blood from the brain.

Doctors have long thought MS to be an autoimmune disease, and the iron buildups to be byproducts of the demyelination process.  Dr. Zamboni, however, believes that this excess of iron is due to the backup of blood into the brain and that this iron causes the veins to leak blood and white blood cells onto the nerves which then leads to lesions.  This condition has been names CCSVI or Chronic Cerebrospinal Venous Insufficiency.

Left: arrows point to clear narrowing of the veins Right: arrow shows twisting of the vein

Dr Zamboni’s original, small scale study, performed 66 angioplasties (opening of the blocked viens) and saw a complete remission of all MS symptoms in 73% of his patients for two years.

CTV W5’s News Story on Liberation Treatment: Parts One and Two

Isn’t this exciting!?  This may or may not be the answer for MS – unfortunately it wasn’t for my family – but it shows promise to at least alleviate symptoms of many affected individuals and it also shows everyone that we haven’t given up and that we’re still fighting for a cure!

The University of Buffalo in New York has partnered with Dr. Zamboni and has begun a major study.  They haven’t published any of there findings yet but here are some links to some website where you can learn more about Liberation Treatment:

CTV News

Liberation-Treament

Wikipedia

Interested in fighting Multiple Sclerosis while have a super fantastic, incredibly awesome, and completely unforgettable time?  I thought so!  There are two great groups that I’ve done quite a bit of research on that I think are worth your support (there’s more but these are my two favorite so far).

The first is the National MS Society.  Every year they have over one hundred bike rides and over 600 walks all over the United States!  Their goal is to get people informed, to get people involved, and to create a world free of MS.  I really encourage you to get your family together, your friends, coworkers, neighbors, etc. and create a team to help the National MS Society in their goals.  I promise you’ll have a great time too!

The second group that I’ve been pretty impressed with is the Multiple Sclerosis Society.  They’re based in the UK, so if you’re wanting your mulah to stay stateside I’d stick with the National MS Society, but they have some pretty fun ways to get involved, including: skydiving, abseiling, bungee jumping, shark dives, sailing, swimming, whitewater rafting, walking or biking the great wall of china, dog sledding, an icelandic lava trek, and SO MUCH MORE.  I went with some of the more extreme examples but there really is something for everyone.

Amprya: a brand new drug meant strictly to help MS patients improve their mobility.  The Neurology Nurse that I often go to for news on up-and-coming Multiple Sclerosis Treatments said that, while her doctors have prescribed it to a lot of their patients, they’ve had trouble getting the paperwork through the company due to high volume of requests.  So far they’ve only been able to get two patients started on it.  The first one loves it, the second had bad side effects and said it didn’t help.    If you have MS and you’ve tried this medication, let us know how it worked for you!

Tysabri: usually for those who either don’t do well with the four traditional medications – Avonex, Rebif, Betaseron and Copaxone – or who have a more aggressive form of the disease.  Tysabri has shown to be effective in decreasing the frequency of flare-ups, slowing disease progression, and has shown promise of positively effecting the number of brain lesion on MRIs.  Unfortunately a few years ago two people died due to liver toxicity and the drug was pulled from the market.  It is back, however, with more strict guidelines in place, including the one that requires only ‘certified’ doctors to prescribe it.

Avonex, Rebif, Betaseron, and Copaxone are all immune-modulating drugs used for multiple sclerosis.  These first three are called interferons and are thought to work by decreasing the ability of immune cells to interact with other cells, to penetrate the blood brain barrier, and to produce the swelling and inflammation that is associated with demyelination.  Copaxone is different, it is a mix of amino acids.  The theory is that the amino acid mixture causes white blood cells that would attack myelin to bind to the drug instead, and decrease the immune cell reactivity towards the CNS.

Which drug is Best?  Unfortunately, no unbiased side-by-side study has been done to compare these drugs.  I spoke with a Neurology Nurse about this issue who said that most Neurologists just want to find the one that the patient is most likely to be able to tolerate and stick with.

Effectiveness: Generally, these medications are able to decrease the frequency of attacks in patients with mild-to-moderate relapsing MS by 18-33%.  Also, the rate of new lesions that appear on a patients MRI is reduced by about 1/3.

When I first heard these numbers I wasn’t too excited.  18-33%!?  How about 80-90%?  Those would be numbers to celebrate.  After thinking about it, however, I realized that that’s pretty awesome.  It’s awesome because it’s buying us time to find something better.  It’s buying us time for a cure.  That my friends is definitely something to celebrate!

There are a few purposes to this blog: 1. To encourage people to want to learn more about Multiple Sclerosis 2. To empower those living with MS and their loved ones with hope and 3. To discuss different treatments and symptom management so that people can get a more comprehensive view of ALL their options.   The Multiple Sclerosis Foundation listed nine articles on their website related to complementary alternative medicine that I thought might be insightful:

Breathing Your Way to Better Health

Come To Your Senses With The Alexander Technique

Health Insurance Coverage for CAM

Herbal Therapy

The Gift of NIA

Possible Disease Modifying Dietary Strategies (Transcript)

Gain Natural Energy Through Your Chakras

Tune Into Music and Tune Out MS

Therapeutic Horseback Riding Helps Rein in MS

Don’t worry, I’m not a quack.  I’m just a girl that believes in health being a complete state of physical, mental, and social wellbeing.  When one becomes compromised, so do the rest.

The environmental theory of Multiple Sclerosis suggests that an environmental factor triggers the symptoms of MS.  This theory is supported by observations that have shown that MS is diagnosed more frequently in temperate climates (farther from the equator)  than tropical or subtropical (closer to the equator).  The map below shows how this holds true in the United States:

This pattern is also evident in countries throughout Europe, New Zealand, and Australia.  Investigators have tried to link this relationship to exposure to viral infections, bacterial infections, environmental toxins, duration of sunlight, changes in temperature and humidity, and diet, however, no factor has been pinpointed  to cause the disease.

The genetic theory proposes that a genetic predisposition makes one more susceptible to developing MS.  Facts that support this theory: MS is most common in caucasians but rare in other races that still live in high risk areas, the risk of developing MS increases from .15%  to between 1 and 4% when an immediate family member has the disease, and the risk further increases to 25% when an identical twin is affected.

So what is science’s conclusion to these two phenomenas?  The disease may likely result from an environmental agent that triggers the illness in a genetically susceptible individual.  What this means, is that both environment and genetics could be to blame

Symptoms of multiple sclerosis are generally categorized into 7 categories: visual, motor, sensory, coordination and balance, bowel, bladder and sexual, and others.  Symptoms vary from person to person and are determined by the location of the lesions in their brain caused by the disease.

Visual: blurred vision, eye pain, double vision, jerky eye movements, lack of coordination between two eyes, and abnormal pupil responses

Motor: muscle weakness, partial or mile paralysis, loss of muscle tone causing stiffness, pain, and restricting movement of affected limbs, slurred speech and related speech problems, involuntary contraction of muscles, involuntary leg movements, and foot drags

Sensory: partial numbness, tingling, buzzing and vibration sensations, loss of sensation, and facial pain.

Coordination and Balance: loss of coordination, shaking when performing fine movements, under- or overshooting limb movements, abnormal balance function in the inner ear, nausea/vomiting/sensitivity to travel sickness, problems coordinating speech, stuttering, and slow limb position feedback

Bowel, Bladder, and Sexual Symptoms: urinary urgency and incontinence, urinary retention, impotence, infrequent or irregular bowel movements, bowel urgency and incontinence, inability to achieve orgasm, and inability to become sexually aroused.

Cognitive: short and long term memory problems, forgetfulness, slow word recall, impairments to speech comprehension and production

Other: Increase in severity of symptoms with heat, acid reflux, impaired sense of taste and smell, epileptic seizures, swallowing problems, respiratory problems, inappropriately cold body parts, autonomic nervous system problems.

Although there is no cure for MS, with modern day treatments many people with the disease are able to go on to live nearly normal lives.  In fact, most diagnosed are expected to have a life expectancy of 95 percent of someone without the disease and only 25 percent are believed to need a wheelchair at some time.

Montel Williams, a prominent television talk show host, talks about his MS, his symptoms, and his management.

In short, multiple sclerosis (MS) is a chronic, degenerative disease affecting the central nervous system, which includes the brain and the spinal cord.  For every person, the disease develops with varying symptoms making it hard to detect and diagnose.  Reliable studies, however, estimate that there are currently 1.1-2.5 million people worldwide suffering with Multiple Sclerosis.   The National Multiple Sclerosis Society estimates that 400,000 of these cases occur in the United States with approximately 200 more being diagnosed each weak.

Who is getting Multiple Sclerosis?

Gender: Women are 2-3 times more likely to be diagnosed with MS

Genetics: Laypersons with no biological connections to MS have a 1 in 750 chance of becoming afflicted.  Having an affected parent or sibling increases your risk to 1 in 100.  Having an identical twin affected increases your risk to 1 in 4.

Ethnicity: MS occurs more often in people of northern Eastern descent.

Geography: MS occurs more frequently in regions farther from the equator.  Rates in northern regions can be as much as 5 times greater.  If a person migrates from a high-risk to a low-risk region before the age of 15, however, they take on the lesser risk.

Geography of MS