What is CCSVI?

A Basic Definition
The Technical Definition
The Origin and History of CCSVI

A Basic Definition

CCSVI stands for “Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). Research indicates that CCSVI is significantly correlated with multiple sclerosis.^{1, 2,3,4   -} As a result of these venous abnormalities, the blood flow rate through the central nervous system back toward the heart may become slowed, and blood may reflux back toward the brain and spine.¹

People with CCSVI have one or more of the following blockages of the veins that drain blood from the central nervous system:

• Stenosis is an abnormal narrowing of the veins that restricts blood flow. Types of stenoses include the collapse of the vein, twisting of the vein, ring-like narrowings in the vein, and other similar obstructions
• An abnormal valve, septum, flap, or membrane that blocks or inhibits blood flow through the veins
• Atresia, hypoplasia, or agenesis are severe venous problems, including veins that are partially closed, underdeveloped, minimally formed, or almost entirely missing

Click here to see an animation that shows how stenosis in veins draining the central nervous system can cause CCSVI. This animation was provided by Dr. Zamboni.

Source: National MS Society

Bladder dysfunction, which occurs in at least 80% of people with MS, can usually be managed quite successfully. Treatment strategies for bladder management include dietary and fluid management, medications, and intermittent or continual catheterization (inserting a thin tube into the bladder to remove urine).

Bladder dysfunction occurs when MS lesions block or delay transmission of nerve signals in areas of the central nervous system that control the bladder and urinary sphincter. The sphincter is the muscle surrounding the opening of the bladder, that controls the storage and outflow of urine. It is this muscle that gives people voluntary control over urination.

Symptoms and Complications

Symptoms of bladder dysfunction can include:

• Frequency and/or urgency of urination
• Hesitancy in starting urination
• Frequent nighttime urination (known as nocturia)
• Incontinence (the inability to hold in urine)

These symptoms can be caused by a “spastic” bladder that is unable to hold the normal amount of urine, or by a bladder that does not empty properly and retains some urine in it. Retaining urine can lead to complications such as repeated infections or kidney damage.

Left untreated, bladder dysfunction also could cause emotional and personal hygiene problems that can interfere with normal activities of living and socialization. It is therefore important to seek appropriate medical evaluation and treatment early, so that the cause of the bladder symptoms can be determined and treated, and complications avoided.

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We now know that Smoking, Mono-Nucleosis and Vitamin D are some of the genetic causes of MS

Multiple sclerosis (MS) is a complex disease that is not caused by a single gene or environmental factor. Rather, many overlapping causes contribute to the disease, as shown here. These may include the action of various genes and exposure to chemicals, pathogens, and other external triggers. The study of epigenetic and other regulatory mechanisms linked to MS susceptibility is only beginning to emerge. Credit: J.Oksenberg/UCSF.

Genetic secrets of multiple sclerosis may be buried in 50 "hot spots" in the human genome, which were just uncovered by a consortium of more than 240 scientists in 23 countries, including researchers at the University of California, San Francisco (UCSF).

Led by the International Multiple Sclerosis Genetics Consortium and the Wellcome Trust Case Control Consortium in the U.K., the results will immediately help to frame the genetics of multiple sclerosis by allowing scientists to identify many of the genes involved and determine how they contribute to this complex disease.

“We have completed a large part of the genetic puzzle of the disease,” said Jorge Oksenberg, PhD, who is the G.A. Zimmermann Endowed Chair in Neurology at UCSF and a co-author on the study.

Longer term, the findings will guide future efforts to assess an individual’s risk of developing multiple sclerosis and to develop new drugs for treating this complex disease, which affects some 2.5 million people worldwide and 400,000 in the United States.

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By Cherie C. Binns RN BS MSCN

Several weeks ago, I was asked by Stuart to get some information on the current state of myelin repair therapies as they relate to Multiple Sclerosis.  At the time, I was reading a book written by a friend from my college days about his nearly thirty years of study of aging of cells, regeneration of cells and the potential therapeutic effects that would come of developing a technology that would take a single cell, reprogram it and allow it to become nerve tissue or heart muscle.  He could see great promise for the cure of many illnesses and, as a result, the prolongation of life with a far greater quality than is currently in existence.  The book is The Immortal Cell by Michael D. West, PhD and is available on Amazon for those interested in the process of developing these technologies and making them work.

After my conversation with Stuart, I researched where we were as a society in stem cell therapies and success with treatment.   I also searched the database at www.clinicaltrials.gov for “Multiple Sclerosis + stem cells” and was pleased to see a list of 26 clinical trials.   However, as I looked closely at each trial, 5 were already closed with no data on the site, 2 were for scleroderma NOT multiple sclerosis, one was for Devic’s, NOT multiple sclerosis, and one was for NMO (neuromyelitis optica) NOT multiple sclerosis.   Of the remaining 15 trials listed, one was in Jerusalem, one in Germany, one in Spain, two in China and two in Thailand.   Of the 8 trials in the USA, two had not yet started recruiting, three were active and no longer recruiting and only three were currently accepting subjects into the trial.

Criteria for these trials are strict.  Persons must have had MS between 5 and 15 years and be between the ages of 18 and 50.  They must have tried the injectable medications and been found to have failed them.  They cannot have taken Novantrone or Tysabri. They must not have had Cytoxan (or immuran, methotrexate, CellCept) within three months of entering the trial or IV steroids within the month of entering the trial.  All trials require that the person be walking when they enter the study.

The proposed approach in these trials is to remove the patient’s own blood cells and process them to target just the stem cells in the blood.   Those stem cells would then be modified by electrical charges to redirect the way they grow and work so that they will, when reinfused, go directly to the brain and spinal cord repairing damaged myelin and nerve tissue.  These are Phase I trials which means the safety is being established in humans so trial size is very small (10-20 persons).  In two of these trials, the patient must undergo complete immune system shut down with chemo therapy and radiation of bone marrow prior to receiving the infusion of their modified stem cells back into their systems.  For full information available to the public on what I have described about these trials, follow this link:

http://clinicaltrials.gov/ct2/results?term=Multiple+sclerosis+and+stem+cells

Dr. Timothy Vollmer, in his September 2009 issue of eMS news, describes what these open clinical trials seek to do.   He writes:

This second type of stem cell transplant is called a hematopoietic stem cell transplantation (HSCT). The blood stem cells that are transferred in an HSCT are typically obtained from bone marrow. In the past, the procedure for obtaining these blood stem cells from the bone marrow was quite grueling and required general anesthesia. Today, however, hematopoietic stem cells are generally collected from the peripheral blood, making the procedure less invasive. (Per Dr. West, “the mortality rate in the  bone marrow stem cell patients is commonly about 30%” hence the use of peripheral blood)

In order to perform an HSCT, doctors first collect a patient’s stem cells (from peripheral blood) and then destroy his/her immune system through the use of chemotherapy and radiation. Once that process is complete, the saved blood cells are re-injected and the person’s body begins to rebuild the wiped out blood cells, bone marrow, and consequently the immune system. This process is called engraftment. As mentioned above, the thought behind this procedure is that by destroying and then reconstituting the immune system, it will ‘reset’ and therefore no longer attack itself, thus halting or at least reducing disease progression.

West’s biomedical company GERON worked diligently for 15 years on this technology once it was working in the laboratory to get it to show promise in an animal model but were never successful in making the transition to a human host.   Here is what West is currently working on as it relates to MS http://cellcureneurosciences.com/aboutCCN.htm .   This link includes a paper on the Animal Model of MS and how it is responding to this new approach to therapy.   To quote Dr. West in an email I received from him this morning:

The opportunity:

Because hES cells can become all the cell types in the human body, at least two therapeutic strategies for MS become apparent. First, it may become possible to produce large quantities of the cells that produce myelin and to introduce those cells into the brain to repair the damage done during the course of the disease. Second, it may be possible to generate the blood-forming cells called bone marrow stem cells so that the immune system that attacks the myelin in MS can be removed from the body and replaced with new blood forming cells that do not have that destructive potential. In a third possibility, the day may come when both strategies are used, that is, the immune cells that attack myelin are removed, replace with new blood cells that do not attack the CNS, and then myelin-producing cells are introduced to repair the damage done in the course of the disease.

Where we are at:

The biotechnology company Geron Corporation led in the early isolation of hES cells. In January 2009, the FDA approved Geron’s first clinical trial which utilized hES-derived myelinating cells for the treatment of thoracic spinal cord injury. This trial is currently in Phase I (safety studies) in humans.  Bretzner et al (2011) have argued that Geron should consider the merits of testing their product on MS patients instead. Their argument is based on the apparent efficacy of Geron’s myelinating cells in mouse models of MS, and the fact that some pharmaceutical agents targeting myelination while not showing efficacy in spinal cord injury, nevertheless show promise in MS. While Geron is currently not enrolling MS patients in its trials, it appears they may do so in the future, or assuming that their product is eventually approved by the FDA, it may be used at that time off label for MS patients.

The Myelin Repair Foundation (MRF) is in the same boat.   They have over 100 strains of cells that look promising and techniques that can change the function of embryonic stem cells and cells from an individual (autologous) which can then be reprogrammed and introduced back into the person.   So far they are years away from actualizing this into a treatment for multiple sclerosis.  Their progress is highlighted in the brochure at this site:

http://www.myelinrepair.org/documents/2941-MyelinRepair_BrochureFULLP8R2.pdf . The MRF also has a video which may help explain how they are approaching this cell technology which can be found here: http://www.youtube.com/embed/juEqDbag88c?rel=0.

Many of the researchers working for the MRF are mentioned in West’s book The Immortal Cell, so have been working on this technology already for more than two decades and are still not ready to bring this to a human model.

In summary, while stem cell therapies hold great promise for the treatment of such illnesses or conditions as Multiple Sclerosis, Parkinson’s, Spinal Cord injury, Heart Disease, Diabetes, the technologies have been intensely studied since the mid 1980s without a reliable crossover from the animal model to the human model.   There are small studies currently being conducted on humans but these come with potential of severe side effects and potential loss of life. 

It is not apparent that a “cure” for MS via this approach or even a reliable repair of myelin in the human host will be available for another 10 years,  if even then.  The reason for this is that when a treatment has been developed, it must then be subject to rigorous safety and dosing trials then go to the FDA for approval.  Many of us have been around to see how long it took to get our first line drugs (the interferons and GA) to market then the resulting battles with Tysabri and Gilenya.  Nothing, currently, is closer than that window of 10 years out in the field of stem cell regenerative medicine to treat or cure Multiple Sclerosis.

Respectfully submitted by:  Cherie C. Binns RN BS MSCN on July 5, 2011

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May 27, 2011

NEW YORK, NY... As the average cost of MS in the United States is nearly $70,000 a year, with the overall annual economic cost of MS being an estimated $28 billion, people living with MS face high out-of-pocket costs even when covered by health insurance. The high out-of-pocket costs for medical care and treatment create not only a financial burden but also discourage people from starting and staying on therapy, which right now is the best approach available for preventing disease activity in people with relapsing MS, the most common form of the disease.

As part of the millions of Americans receiving their medical coverage through Medicare, people with MS have already begun to benefit from improvements to the Medicare prescription drug program included in the Affordable Care Act and are now receiving a 50% discount on covered brand name medications bought when they are in the “donut hole.” This is particularly important for people with MS as there are no generic equivalents at present for any of the FDA approved disease modifying therapies used by the MS population. For those on symptom management therapies where generic drugs are an option, a 7% discount is now being realized.

“To receive the discount for their prescribed medications, no special action is required, as the discount is automatically applied,” advises David Chatel, Executive Vice President, Advocacy at the National MS Society. “It is important, however, that our MS constituency on Medicare know of these new cost savings so that they continue with their needed medications.”

Approximately 25% of all people in the US living with multiple sclerosis are Medicare beneficiaries, and most of them rely on Medicare prescription drug plans (Part D) for access to their medicines. But because their drug costs can be exceptionally high, many Part D members with MS hit the ‘coverage gap’ each year. The coverage gap, or so-called “donut hole,” is the period when Part D enrollees must pay 100% of their medication costs. In calendar year 2011 that coverage cap occurs when $2,840 has been spent on needed medications. Prescription drug coverage does not resume until the enrollee has incurred $4,550 in out of pocket medication costs bringing them to the Medicare catastrophic coverage level.

This increased financial relief for those stuck in the coverage donut hole builds on the 2010 one-time rebate of $250 given to Medicare Part D enrollees that hit the donut hole. These initial steps are part of the plan to eliminate the donut hole coverage gap by the end of the decade. These important benefits will improve the quality of life and financial stability of families affected by MS.

Source: National MS Society

Source: WebMD

Slideshow: A Visual Guide to Multiple Sclerosis

Learn more of Multiple Sclerosis when watching this Visual Guide which will help you to

better understand the illness.

Click here, sit back, watch and listen

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Epidemiological data show several interesting trends regarding multiple sclerosis: Different populations and ethnic groups have a markedly different prevalence of MS. The disease is especially common in Scotland, Scandinavia, and throughout northern Europe. In the U.S. the prevalence of MS is higher in whites than in other racial groups.

Studies show that MS is more common in certain parts of the world, but if you move from an area with higher risk to one of lower risk, you acquire the risk of your new home if the move occurs prior to adolescence. Such data suggest that exposure to some environmental agent encountered before puberty may predispose a person to MS.

Moreover, MS is a disease of temperate climates. In both hemispheres, its prevalence increases with distance from the equator.

Also there have been "epidemics" of MS -- for example, the group of people living off the coast of Denmark after WWII, suggesting an environmental cause.

What Role Do Genetics Play in Multiple Sclerosis?

Researchers believe that multiple sclerosis may in part be inherited (genetics contribute to the increased risk of MS seen in family members). First, second and third degree relatives of people with MS are at increased risk of developing the disease. Siblings of an affected person have a 2%-5% risk of developing MS.

Researchers believe that there is more than one gene that makes a person more likely to get MS. Some scientists theorize that MS develops because a person is born with a genetic predisposition to react to some environmental agent, which, upon exposure, triggers an autoimmune response.

Sophisticated new techniques for identifying genes may help answer questions about the role of genetics in the development of MS.

What Viruses Are Linked to Multiple Sclerosis?

Some studies have suggested that many viruses such as Epstein-Barr (mononucleosis), varicella zoster, and the hepatitis vaccine may be the cause of MS. To date, however, this belief has not been proven.

Are There Other Potential Factors That Cause Multiple Sclerosis?

There is growing evidence suggesting that hormones, including sex hormones, can affect and be affected by the immune system. For example, both estrogen and progesterone, two important female sex hormones, may suppress some immune activity. Testosterone, the primary male hormone, may also act as an immune response suppressor. During pregnancy, estrogen and progesterone levels are very high, which may help explain why pregnant women with MS usually have less disease activity. The higher levels of testosterone in men may partially account for the fact that women with MS outnumber men with MS by 2-3 to 1.

Article Source:  WebMD

There is no single test that is proof-positive for diagnosing multiple sclerosis. However, there are accepted criteria for making the diagnosis, but even this system is imperfect.

Since diagnosing MS can be very difficult, a neurologist who specializes in treating MS should evaluate your symptoms. As many as 10% of people diagnosed with multiple sclerosis actually have some other condition that mimics MS. Examples of other conditions that masquerade as MS include inflammation in the blood vessels, multiple strokes, vitamin deficiency, lupus, or a brain infection. Sometimes stress-related disorders can lead to a misdiagnosis of MS.

How Is a Diagnosis of Multiple Sclerosis Made?

An accurate diagnosis of multiple sclerosis is based on your medical history and a neurological exam (an exam of the function of the brain and spinal cord) using various tests. A lot depends on the skill of the doctor in asking the right questions to uncover information and to properly evaluate the signs and symptoms of a malfunctioning brain or spinal cord.

In addition to a thorough medical history and exam, a variety of specialized procedures are helpful -- although not always necessary -- to accurately diagnose MS. These include imaging techniques, such as MRI, spinal taps or lumbar punctures (examination of the cerebrospinal fluid that runs through the spinal column), evoked potentials (electrical tests to help determine if MS has affected a person's nerve pathways), and lab analysis of blood samples.

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