Even for very experienced interventional radiologists, the treatment of CCSVI is a whole new ballgame, requiring brand new skills, techniques, and expertise

Marc Stecker (The Wheelchair Kamikaze) writes a report on a CCSVI Symposium:

First and foremost, I'd like to thank everybody who sent get well wishes via the the blog and e-mail during my recent illness. They were all deeply appreciated, and helped keep my spirits up when the going got tough. Since I want to report today on some timely CCSVI news, I'll report fully on my getting sick and subsequent hospital stay later in the week, but for now, suffice it to say that Multiple Sclerosis sucks. Big time.

A symposium on the "vascular theory of MS" (these days known far and wide as CCSVI) was held Monday 7/26 at SUNY Downstate Hospital in Brooklyn. Organized by Dr. Sal Sclafani, who did my attempted liberation procedure back in March, the symposium was attended by many of the heavy hitters in the world of CCSVI, including Dr. Tariq Sinan of Kuwait, Dr. Ivo Petrov of Bulgaria, Dr. Gary Siskin of Albany, New York, Dr. Fabrizio Salvi of Italy, Dr. David Hubbard of San Diego, California, Dr. Mark Haacke of Detroit, Michigan, and, of course, Dr. Sclafani himself.

Because of my recent health issues, my stamina is a bit low these days, so I missed the morning sessions, which dealt primarily with an overview of CCSVI and some of the imaging techniques used to identify the condition in patients non-invasively. I did attend the afternoon presentations, though, which included talks by Dr. Sinan, Dr. Petrov, and Dr. Siskin. All three physicians have been doing CCSVI procedures by the dozens, and between them account for over 400 "liberation procedures". They each related what they've learned treating patients for CCSVI, including case histories and some of the techniques they developed as their knowledge base and experience has grown.

Rather than give a blow-by-blow account of each presentation, I'll relate some of the general themes that emerged, and the pertinent "take away" points that were made by both the presenting doctors and the physicians in the audience. The one overarching theme that seemed to encompass all that was said is that we are at the very beginning of our understanding of the proper techniques and procedures used to treat the condition known as Chronic Cerebrospinal Venous Insufficiency. There is much more that is not known than is known, and the point was made several times that even for very experienced interventional radiologists, the treatment of CCSVI is a whole new ballgame, requiring brand new skills, techniques, and expertise. The treatment of CCSVI is definitely still a work in progress.

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Clinical Trial to Explore "Taking Breaks in Natalizumab (Tysabri®) Treatment"

This is a randomized, rater blinded trial in people who interrupt treatment with natalizumab with or without being treated with other immunomodulatory drugs, or continue treatment with natalizumab.

 

The main purpose of this study by Biogen Idec is to find out the following when participants stop taking natalizumab for 24 weeks:

 

• How quickly the effects that natalizumab has on the immune system disappear
• When MS symptoms return
• If other drugs for MS may help control MS symptoms during the natalizumab-interruption period.

This study will also explore how quickly the effects of natalizumab return after resuming natalizumab dosing. 

 

Major criteria for being accepted include:

• A diagnosis of a relapsing form of MS
• Treatment with natalizumab according to locally approved prescribing information
• Other protocol defined inclusion/exclusion criteria may apply.

 

For more information refer to identifier NCT01071083 at www.clinicaltrials.gov.

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Needed Advice about Pain Medications

While prescription pain medication can ease the suffering associated with MS pain symptoms, it is important to understand the responsibilities associated with having these drugs in your possession. WebMD offers the following advice:

 

• Pills are actually little drug-delivery machines. They don't work the way they're supposed to when taken apart the wrong way. Scored pills should be cut only across the line. Those without scoring should not be cut at all, unless you're specifically instructed to do so. When you chop the pills incorrectly, they may not work. In addition, they will taste bad when the coating is cut away.

• When your pills expire, throw them away! One reason is that pills stored at home start breaking down soon after their expiration date. That's especially true of drugs kept in the moist environment of the bathroom medicine cabinet. If you take a pill that's broken down, it may not work -- or you may end up in the emergency room because of reaction to a breakdown product.

• When it comes to pain medication, sharing is a bad thing. Unfortunately, it's very common for people to share prescription medications with friends, relatives, and co-workers. That person you share with may have a problem that keeps his body from eliminating the drug, or he may have an allergic reaction, or the drug may interact with a medication he is taking, with life-threatening results.

 

To learn more pain medication mistakes, go to http://www.webmd.com/pain-management/chronic-pain-10/9-pain-pill-mistakes. 

source for this article comes from the MSFYi newsletter from the MS Foundation

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Digitized Books for the Disabled

For some people with MS, book reading becomes difficult, and sometimes it’s not the eyes that are to blame, but rather the inability to turn a page.

 

Brewster Kahle, a digital librarian and founder of a virtual library called the Internet Archive, has launched a worldwide campaign to double the number of books available for print-disabled people, according to an article in USA Today.

 

The Internet Archive began scanning books in 2004 and now has more than one million available in DAISY format, or Digital Accessible Information System, a means of creating "talking" books that can be downloaded to a handheld device. Unlike books on tape, the digital format makes it easier for print-disabled people to navigate books because they can speed up, slow down and skip around from chapter to chapter.

 

About 7 million books are downloaded by Internet Archive users around the world each month, Kahle says. With 20 scanning centers in the USA and eight in countries around the world, the archive scans more than 1,000 books a day from more than 150 libraries, including the Library of Congress— the largest library in the world that also offers online digitalized collections of books, articles and newspapers.

 

"The Internet Archive encourages people to download all the public-domain books they want — free — and we are not looking to charge libraries for access to the books we have digitized from their collections," Kahle told USA Today.

 

For more information go to www.archive.org/index.php. 

Article source: MS Foundation from their MSFYi newsletter

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Stem Cell Website to Watch

Source : The MS Foundation

People seeking stem cell treatments for various conditions now have an online resource to help them evaluate the claims of clinics and companies around the world.

 

The recently launched website, www.closerlookatstemcells.org, set up by the International Society for Stem Cell Research (ISSCR), provides information about stem cell biology as well as questions to ask clinics offering these often-experimental treatments.

 

The site will eventually contain a list of clinics that did or did not provide information to the ISSCR on issues such as whether a medical ethics committee is involved in a treatment to protect patients' rights, or whether there is oversight from a regulatory body like the FDA or the European Medicines Agency. The website is the brainchild of a task force convened by Irving Weissman, MD, director of the Stanford Institute for Stem Cell Biology and Regenerative Medicine in California, during his tenure as president of the ISSCR, which ended earlier this month.

 

Reporting in the July 2 issue of Cell Stem Cell, members of the task force (including researchers, clinicians, ethicists, jurists, and patient advocates), said they have become increasingly aware of misleading direct-to-consumer advertising touting expensive stem cell therapies.

 

Exploiting people's hopes and fears, these ads often make exaggerated claims of efficacy, underestimate the potential risks, fail to disclose methods, and leave out information on whether the treatment is conducted with regulatory oversight, according to the authors. They said such unethical marketing "could place individual patients at risk and also jeopardize the progress of legitimate stem cell clinical translation."

 

The website set up by the ISSCR aims to give patients and their physicians the information needed to assess clinics' claims and decide whether to proceed with treatment. Using a brief form, patients are able to submit websites for investigation by the ISSCR. The results of the inquiries will be posted on the ISSCR website.

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For those that read this blog and/or my facebook page(s)

I wonder how many of you visit the MSV&N website? Sure, I can just look up stats, but I would rather hear from you..

Do you know, that on my website's homepage, there is a guestbook where you can leave comments of the site or use it as a place to ask questions or communicate with others?
If you have yet to see this, then please click here.

To write anything in the guestbook though, you need to first be registered with our site. And if you are not yet registered, then simply click here. It will take you less than 30 seconds to complete the registration.

One person once wrote back that it only took her 17 seconds. I wonder if she really clocked it???

Other features of the website include articles from an occupational therapist, an MS RN (ask the MS Nurse),
Stem Cell and CCSVI information, a resources section, patient videos and more.

If you have an MS related video to share with others, please send it to me, for me to add to one of our sites

Visit  to see what so many refer to when seeking MS information.

Did you know that you can review previous e-Newsletters dating back to January 2009?  Why? Well maybe because there is information there that you question. Use the search box found at this blog of archived e-newsletters to find what you question about MS.


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2 Miami-Dade students win scholarships from Multiple Sclerosis Society

Two Miami-Dade students whose mothers suffer from multiple sclerosis have received college scholarships.

BY ANNA QUINTANA

AQUINTANA@MIAMIHERALD.COM

Beatriz Benitez was only 7 years old when her mom was diagnosed with multiple sclerosis. At 13, Alexander Alvarez found out his mother also had MS.

Life hasn't been easy for them because both have had to take care of their siblings and do chores.

But this fall, when Benitez and Alvarez start college, they will receive a little help from the National Multiple Sclerosis Society.

Benitez, who is from Doral, and Alvarez, from Hialeah, are the only two students from Miami-Dade County, from the 500 scholarships awarded, who received a $3,000 scholarship.

To be eligible for the scholarship, you must either have the debilitating disease that attacks the central nervous system or be the child of someone who has it, as is the case of Benitez and Alvarez.

Jolene Caprio, communications coordinator at the MS Society, South Florida chapter, stressed the importance of the essay written by the students.

``Thousands applied, but they stood out,'' Caprio said. ``The essays said a lot about themselves, their family responsibilities and their future goals.''

Benitez and Alvarez have had to sacrifice a lot to help their families on a day-to-day basis.

Benitez struggled with her grades at school because, aside from taking care of her mother, Carmen Benitez, she also has to take care of her older brother, who has Down syndrome, and juggle a part-time job.

``It was a barrier I wasn't ready for,'' Benitez said. ``My grades really suffered from it, but I was able to raise my grade-point average with online classes.''

Alvarez was not able to participate in any extra-curricular activities during high school so he could help his mom, Natti Alvarez.

``I cook. I clean. I help her get dressed in the mornings. I take my little brother and sister to and from school,'' Alvarez said. ``I help out the whole day.''

Benitez and Alvarez also decided to stay home for college to be able to continue helping out their families.

Benitez will be attending Miami Dade Honors College to study chemistry and Alvarez will be starting at Broward College to study either criminal justice or education.

``We support each other,'' Alvarez said. `` It's like a support group, we are always there for each other.''

But at the end of the day, Benitez and Alvarez are just regular teenagers.

Alvarez likes to work out and play video games, while Benitez enjoys mixed martial arts and horseback riding.

Both have learned a lot about themselves through the struggle with their parents' disease.

``It helped me mature,'' Alvarez said.

``I see things differently now. It taught me to live in the moment.''

For Benitez, the disease made her realize she wanted to be a doctor.

``You get into the hospital routine and you either love it or hate it,'' Benitez said. ``It showed me I wanted to do something that will help people.''

Benitez and Alvarez also have some advice for those who may not understand the disease.

``It's definitely a misunderstood illness,'' Benitez said.

``It's not something to overlook, and it changes your whole life.''

``I just hope we find a cure,'' Alvarez said.

Source: Miami Herald

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The Longer You Sit, the Shorter Your Life Span: Study

Effect was seen even when researchers factored out obesity, exercise.

By Amanda Gardner
HealthDay Reporter

The more Americans engage in one of their favorite pastimes -- sitting around -- the shorter their average life span, a new study suggests.

The effect remained even after researchers factored out obesity or the level of daily physical activity people were engaged in, according to a study of more than 120,000 American adults.

It's just one more reason to "get up and walk," said Dr. Jay Brooks, chairman of hematology/oncology at Ochsner Health System in Baton Rouge, La. "The message here is like everything in your life. People need to recognize that the things you do every day have consequences. And if you're in a job that does require sitting, that's fine, but any time you can expend energy is good. That's the key."

Continue with this read

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Service Dogs at My Angel with Paws, Inc

Welcome to My Angel With Paws, Inc.

a not-for-profit organization in DeLand, FL

My Angel With Paws Heros

http://www.myangelwithpaws.org/

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CCSVI news: Newfoundland and Labrador's health minister wants proof MS treatment works

July 29, 2010

Newfoundland and Labrador's Health Minister Jerome Kennedy said the province does not plan to fund research into a controversial MS procedure.(CBC)

Newfoundland and Labrador's health minister said Wednesday the province will only fund a controversial procedure for multiple sclerosis if research proves that it is safe and effective.

"The evidence-based practice must remain the cornerstone of the health care system," said Health Minister Jerome Kennedy. "Clinical trials will determine if the Zamboni procedure works."

Saskatchewan announced Tuesday that it will fund clinical trials of the treatment — known as the Zamboni procedure or liberation therapy — that increases blood flow to the brain by opening blood vessels.

Kennedy said Wednesday that Newfoundland and Labrador does not plan to fund clinical trials of the effectiveness of this procedure for treating multiple sclerosis.

He said that it would only duplicate work already being done elsewhere.

Kennedy said if the treatment does prove to be effective, the province's medical insurance plan will pay for it.

"If it works, it will move from an experimental procedure to a procedure that is covered," said Kennedy.

Kennedy said the Zamboni treatment could prove to be less expensive than drugs that are currently approved for MS treatment.

The procedure, developed by Italian neurologist Dr. Paolo Zamboni, uses balloon angioplasty — a proven technique for opening narrowed blood vessels to the heart.

Article Source: cbcnews

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