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Friday, April 2, 2010
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- Horace Walpole
My journey through CCSVI self-education, diagnosis, and treatment has been one of the most remarkable experiences of my life, whether or not I ever see any benefit from it.
So with all that I have learned and all that I have now experienced, what is my position on the CCSVI – MS connection? From a purely scientific point of view, nothing is yet proven. We have pilot studies. We have anecdotal evidence. We have well thought out theories. We have incredible enthusiasm among patients and some doctors. We have trials in progress (not enough, mind you). We simply don’t have irrefutable, scientific proof of the nature of the connection yet, especially for the relatively rare primary progressive MS (my type).
I do have a scientific background, and that part of me will not be satisfied until much more data is independently collected and analyzed. But I am also an MS patient and an MS advocate. This side of me does not demand the same burden of proof as my scientific side does. The good news is that I don’t have to choose a single perspective. I can honor them both.
I am personally convinced that to some extent CCSVI contributes to or even causes MS, although I can’t prove it. I don't know how robust that relationship is, but I feel that there is something profound going on here. Again, I am less informed and therefore less confident about the relationship between CCSVI and primary progressive MS than I am about the relationship between CCSVI and the more common relapsing remitting MS.
Given this, what do I believe should happen next? I'm glad you asked.
I believe that every person on the planet with clinically definite multiple sclerosis should be tested for CCSVI. Unfortunately, I'm not exactly sure what I mean by “tested.” Relying on the run-of-the-mill MRV and ultrasound examinations isn't the answer. There are only a few clinics in the world that are proficient at using these noninvasive tests to diagnose CCSVI. That is not a reason to stop using these tests, but rather a reason to become better at using them- through practice. The gold standard is the catheter venogram, and even that needs to be performed by an interventional radiologist who has some level of competency or at least genuine interest in CCSVI. Every MS patient deserves to know if the veins that drain their central nervous system are functioning properly, and they deserve to know that now.
CONTINUE reading from Mitch's Blog "Enjoying the Ride"
Part one of a two-part video webcast series that explores:
- The "why me?" question
- Living with the uncertainty of MS
- My self-esteem
Thursday, April 1, 2010
Continue reading by clicking here
Extracranial Doppler sonographic criteria of chronic cerebrospinal venous insufficiency in the patients with multiple sclerosis
Wednesday, March 31, 2010
Data from EMD Serono's Multiple Sclerosis Portfolio to be Presented at the 62nd Annual Meeting of the American Academy of Neurology
Study To Evaluate Treating Chronic Cerebrospinal Venous Insufficiency (CCSVI) in Multiple Sclerosis Patients
Wow and Yes, this will take place in The USA
Tuesday, March 30, 2010
Over the years, people have suggested many different causes for MS. Here are some of the most popular theories that have been proved incorrect:
- Owning a dog or other small pet
Some years ago, canine distemper, a virus carried by dogs, was proposed as a cause of MS, but research has since ruled out household pets as the culprit.
There is no evidence that MS is triggered by a reaction to a specific environmental allergen. Since allergies are common in the general population, allergies can occur in a person with MS.
- Exposure to heavy metals
Although poisoning with heavy metals such as mercury, lead or manganese can damage the nervous system and produce symptoms such as tremor and weakness, both the process and the symptoms are different from what occurs in MS. There is no evidence that heavy metal exposure causes MS.
- Physical trauma
A 1999 report of the Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology, based on a comprehensive study of the literature on the subject, concluded that "the evidence supports no association between physical trauma and either MS onset or MS exacerbation." Read their report in the journal Neurology or read more about trauma and MS.
No scientific evidence supports the claims on several Web sites that aspartame, an artificial sweetener used in many diet soft drinks and other foods, causes MS.
Information reported to the editor of this blog by Karen H in Ft. Myers, Fl.
March 29, 2010
By Val Willingham - CNN Medical Producer
Scientists and doctors who study multiple sclerosis know, as of now, one of the best way to treat the condition is with beta-interferon. But over the years, the drug's effectiveness has been lukewarm in some people causing a third of all MS patients who are on the drug to suffer from uncomfortable flu-like side effects. Many can't handle it and so far, researchers have never figured out why.
Now scientists from Stanford University School of Medicine may have discovered that there are actually two kinds of multiple sclerosis and that each reacts differently to the standard treatment.
Researchers know multiple sclerosis is triggered when immune cells, called T cells, attack the myelin sheathing, which insulates neurons in the body. Healthy myelin sheathing is essential for the nervous system to function properly. When this material is attacked, it can cause serious symptoms including paralysis and blindness in those with MS.
In this study, published in the current issue of Nature Medicine, researchers established animal models of multiple sclerosis by injecting mice with myelin into their immune systems, causing it to attack the animals' own myelin nerve-cell coatings, much as MS attacks a human being’s. By looking at these animals and treating them with beta-interferon and then testing their blood the researcher found there were actually two different types of MS, caused by different patterns of T cells in the body. So what works for one, doesn't necessarily work for the other.
The researchers found that beta-interferon improved the condition of animals who had MS caused by gamma-interferon-secreting T cells, but made the symptoms worse in those mice whose MS was caused by IL-17-secreting T cells.
Intrigued, the investigators turned to humans. One of the study's authors, Dr. Brigit deJong, had previously been involved in research in Amsterdam in which multiple sclerosis patients were treated with beta-interferon and closely followed. The Stanford group obtained blood samples taken from 26 of these patients both before and about two years after the initial treatment. Without knowing which samples came from patients who had responded well or poorly to beta-interferon treatment, they went about measuring IL-17 levels in those samples. The human results were much like the animal models. Those with high amounts of IL-17 T cells had had negative reactions to beta-interferon.
"By making these distinctions in large human studies, people with multiple sclerosis might someday be able to take a simple blood test to see whether they are likely to respond to treatment with the standard multiple-sclerosis therapy." says senior study author Lawrence Steinman, M.D. of the Neurology and Neurological Sciences Department at the Stanford University School of Medicine.
If an inexpensive test can be developed to detect IL-17 in humans, MS patients and their doctors will know whether beta interferon is or isn't going to work. "For those who don't have the IL-17 T cells," notes Steinman, "those patients can receive beta-interferon and probably not in a diluted form but in a higher dose, which will help them better fight their illness."
According to the National Multiple Sclerosis Society MS affects 400,000 people in the United States. Dr. Patricia A. O'Looney, vice president of biomedical research for the National Multiple Sclerosis Society, says the new research is very exciting. "Obviously this will need more testing in human subjects," explains O’Looney, "But this is a positive step in the right direction to helping to treat MS and other autoimmune conditions."
Posted by: Val Willingham - CNN Medical Producer
Telephone Support Group for Newly Diagnosed (within 2 years)
For South, North and
Date: Wednesday, March 31st, 2010
Time: 7:00 PM to 8:00 PM
*Please call-in 5 minutes before start time
Topic: Communication and Maintaining Relationships
Call in number: 1-800-910-3597
Facilitator: Susan Dorne, OT
Subject: Support Group
The National MS Society: 1 800 FIGHT MS