Please visit our MS learning channel on Youtube, which provides hundreds of topics from our education programs, that were video-recorded and archived here: www.youtube.com/msviewsandnews

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Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

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Friday, March 19, 2010

Stem Cell Report Card - Where's the Black Box

Where America Stands: Stem Cell Research

March 16, 2010 4:12 PM

After years of research and billions of dollars spent, stem cell research is promising, but how close are we? Dr. Jon LaPook shows us 'Where America Stands' on stem cell research.


CLICK this Link: http://www.cbsnews.com/video/watch/?id=6305502n&tag=api - to see this CBS video

THIS IS REALLY INTERESTING!!!

HOPE IS on the Horizon.....

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Brain Fitness Software Improves Cognitive Function in Multiple Sclerosis Patients

Submitted by Denise Reynolds RD - EMAX Health

Cognitive dysfunction is a common, often scary, symptom of Multiple Sclerosis. Cognitive evaluation techniques and neurorehabilitation studies have been used to greatly improve the dysfunction. A new brain fitness software by CogniFit Inc. May help improve cognitive function and skills of multiple sclerosis patients.

Multiple Sclerosis (MS) is a chronic inflammatory disease that causes lesions in the brain and nervous system. It is reported that about 50% of people with MS admit to experiencing cognitive problems, such as the ability to pay attention, learn and remember information, solve problems, and use language to express ideas. Mood disorders and depression are also common which can exacerbate the cognition process.

Some of the specific cognitive deficits observed in people with MS are:
Memory Dysfunction. This is the most commonly reported cognitive dysfunction in MS and occurs in 20 to 44% of people with MS. The type of memory deficit most often reported is free recall of recently learned material. Free recall is the ability to get to a memory instantly.
Verbal fluency is affected in some people with MS whereas verbal comprehension appears undamaged. Verbal fluency deficits usually take the form of slowed free recall of words that describe concepts and less often words that name objects.
Cognitive Fatigue. On average, people with MS tire more quickly during psychological tests. Patients appear to lose the ability to hold attention for a long period of time.
Impaired Planning Ability. One study reported that 40% of people with MS are less able to plan things than healthy controls.


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Many of us with MS have cognitive issues. Forgetting is the number one issue. This being said, don't put-off registering at my website. Do it now. It will take less than 30 seconds to complete and then, you will begin receiving my weekly e-Newsletter known better as "Stu's Views and MS Related News".
Here is the Link: http://goo.gl/6yI8

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Thursday, March 18, 2010

Cannabis drug nearing UK, Spain approval

Thursday, March 18 11:08:30

A pioneering - but much delayed - cannabis-based medicine for multiple sclerosis is now on track to win regulatory approval in Britain and Spain in the second quarter of 2010, its maker said on Thursday.

GW Pharmaceuticals said regulators in both countries had concluded there were no major quality, safety or efficacy issues remaining to be resolved. Talks are now focused on points of clarification related to the patient information leaflet.

Approval of the dug Sativex in Britain and Spain will be a landmark for the British drugmaker, whose shares jumped more than 12 percent to a four-year high on the news by 0940 GMT.

The medicine, which is sprayed under the tongue, is to be marketed in Britain by Germany's Bayer and in the rest of Europe by Spain's Almirall.

GW will get a £10 million milestone payment from Bayer on British approval, while a further £2.5 million is payable by Almirall following both regulatory and pricing approval in Spain.

Clinical trials have shown GW's drug Sativex reduces spasticity in multiple sclerosis patients who do not respond adequately to existing therapies.

It became the world's first cannabis medicine to win regulatory approval when it was approved in Canada in 2005. GW had originally hoped to win approval in 2003 for its drug - which is extracted from marijuana plants grown at secret locations in the English countryside - but the medicine has been hit by a string of regulatory delays in Europe.

The rate of uptake in Britain will be limited until the National Institute for Health and Clinical Excellence (NICE) decides whether it should be reimbursed on the National Health Service (NHS).

Further clinical trials need to be completed before the medicine is ready for submission for approval in the US, where GW's partner is Otsuka of Japan.

(c ) Reuters



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Potty Humor


THE POTTY

A LITTLE THREE YEAR OLD BOY IS SITTING ON THE TOILET. HIS MOTHER THINKS HE HAS BEEN IN THERE TOO LONG, SO SHE GOES IN TO SEE WHAT'S UP. THE LITTLE BOY IS SITTING ON THE TOILET READING A BOOK. BUT ABOUT EVERY 10 SECONDS OR SO HE

PUTS THE BOOK DOWN, GRIPS ON TO THE TOILET SEAT WITH HIS LEFT HAND AND HITS HIMSELF ON THE TOP OF THE HEAD WITH HIS RIGHT HAND.


HIS MOTHER SAYS: "BILLY, ARE YOU ALL RIGHT? YOU'VE BEEN IN HERE FOR A WHILE.


BILLY SAYS: "I'M FINE, MOMMY. I JUST HAVEN'T GONE YET."


MOTHER SAYS: "OK, YOU CAN STAY HERE A FEW MORE MINUTES. BUT, BILLY, WHY

ARE YOU HITTING YOURSELF ON THE HEAD?"


BILLY SAYS: "WORKS FOR KETCHUP."

Beneficial impact of vitamin D could alleviate symptoms and treat MS

March 18, 2010

Glasgow GP Dr Tom Gilhooly is at the forefront of an exciting new treatment for sufferers of MS. He comments ‘Scotland has the greatest incidence of Multiple Sclerosis in the world – and has more to gain than any other country from new developments such as CCSVI.’

CCSVI (Chronic Cerebrospinal Venous Insufficiency) is now an internationally recognised condition which has been found more commonly in MS patients. Gilhooly explains ‘We need more research to establish if treating CCSVI will improve outcomes in MS, but the theory does make sense. Leakage of iron from leaky veins could increase immune activity and contribute to breakdown of the blood brain barrier. Also MS lesions tend to occur round veins which makes sense if CCSVI is present. It’s early days, but this could be one of the greatest medical breakthroughs of the early 21st century.’

Gilhooly has one of the largest MS private practices in the UK, based at the Essential Health Clinic in Glasgow. There are plans to open a similar centre in London and they are actively seeking to offer scanning services for CCSVI in both London and Glasgow at some point later in 2010.

Gilhooly continues ‘The beneficial impact of vitamin D, antioxidants and omega-3 also fit the CCSVI hypothesis, and could be used to alleviate the symptoms and treat MS. The Doppler ultra sound scan required to show the CCSVI abnormalities has been specially adapted and we hope to have anultrasound technician fully trained later this summer.’

The cost of the scans in the UK is still to be finalised. Gilhooly and his team are also liaising with intervention radiologists to develop treatment centres around the UK.

SOURCE Cision

News-medical.net


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MS surgery draws Ottawa man to Poland

Younger brother from Winnipeg with MS also undergoing procedure
March 18, 2010

An Ottawa man with multiple sclerosis is cashing in his retirement savings to go to Poland on Monday for controversial surgery he hopes will relieve his symptoms.

Evan Thornton, 49, is a busy community activist, online newspaper publisher and father. But MS has been slowing his pace. The condition has left him with numbness on the right side of his body, and his headaches and fatigue, common MS symptoms, have been getting worse.

Thornton says a new surgical procedure has given him hope. The treatment is based on the theory that MS is linked to chronic cerebrospinal venous insufficiency, a condition where blocked veins in the neck or chest prevent blood from draining properly from the brain.

Dr. Paolo Zamboni, the Italian vascular surgeon who came up with the theory, devised an experimental treatment similar to angioplasty, which involves removing the blockage in the veins that carry blood to and from the brain. Zamboni gained international attention after he published a study in 2009 that suggested the treatment was highly successful in reducing MS symptoms.

The surgery in Poland based on Zamboni's work will cost Thornton about $10,000. It's not covered under his health insurance, as the treatment is still being researched in North America. But some doctors overseas offer to perform it.

Thornton said he's not willing to wait for the surgery to be accepted by North American doctors.

"I'm turning 50 this year and this is a chance to start so many things again," he said.

Brother from Winnipeg also making trip

Thornton won't be alone when he flies to Poland. His younger brother Duncan, who lives in Winnipeg and also has MS, will be going with him to undergo the same procedure.

The 47-year-old Winnipeg author said the procedure presents a chance to lead a more normal life in the future.

"I've got two little kids and I've got other books I'd like to write," he said. "There's a good chance I'll go on having mild symptoms for a long time, but it's an unpredictable disease."

Like his brother, Duncan is paying $10,000 for the surgery.

The MS Society of Canada has reacted to Zamboni's research with caution. In November 2009, the society said it would offer grants for researchers in Canada to examine the procedure's safety and effectiveness. In the meantime, the society urged people with MS to be patient and continue with their regular treatment, which often includes the use of medication.

Canada has one of the highest rates of multiple sclerosis in the world, according to an international survey.

The 2008 Atlas of Multiple Sclerosis showed MS strikes 133 people out of every 100,000 in Canada, the fifth highest rate among countries surveyed between 2004 and 2005.


Read more: http://www.cbc.ca/health/story/2010/03/18/ott-ms-surgery.html?ref=rss#ixzz0iYYbFLJH

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"Stu's Views and MS Related News", weekly M.S. e-newsletter, then please take 20 seconds to register at: http://www.msviewsandnews.org. - Thank you

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CCSVI & MS Studies - Updated information from the False Creek Healthcare Center

A collaboration with the leading research groups on the link between CCSVI and MS

We are very pleased to offer Canadian and International patients the opportunity to undergo MRV/MRI and also doppler studies for the diagnosis of CCSVI. Our 3TGE MRI machine is fully equipped with state of the art technology inaccessible in any public hospital in Canada. We are collaborating with the leading research groups on the link between CCSVI and MS. We are using the MRI protocol put forward by Doctor E. Mark Haacke.

What To Expect

When you come in for your diagnostic you may either have the MRI and the Doppler Ultrasound on the same day, this is preferable or you may schedule the scans on different days.

Doppler Ultrasound portion of detecting CCSVI
The Doppler Ultrasound takes approximately 30 minutes and is performed by a radiologist who is trained in CCSVI detection. It’s important to note that we do not use a technician for this service. This means that you can discuss the findings directly with the radiologist who will be providing you with a report after you have had your scan.

MRI portion of detecting CCSVI
The 3 Tesla MRI scan includes a scan of your brain, neck, and upper chest. This scan takes approximately 90 minutes to 120 minutes. Our protocols for the MRI are carefully monitored by our radiology team and Doctor Haacke’s team. It is important to note that our experience with many patients has led to us becoming an ‘Alpha’ site for CCSVI diagnosis. Our neuroradiologists have gained considerable experience in all the different protocols that will help in CCVI detection.

Your MRI Report
Your MRI report can be used by Interventional Radiologists at the time of venography. You can request a follow up consultation for a detailed explanation of your results. You will also have the option for us to send your images to Dr. Haacke’s team for post processing iron quantification and flow quantification analysis. Dr. Haacke’s analysis will be a useful tool if you return in the months to come after your Liberation Treatment. We will then be able to assess wether this heavy metal content has decreased in your brain. An example of Dr. Haacke’s analysis can be viewed here (pdf).

Please note, the only way you can definitely make a diagnosis about CCSVI is at venography, this means at the time of Liberation. The reports that our doctors will provide for patients are what’s required for any interventional radiologist to go to venography.

Our staff can take care of accommodations, transportation and other questions regarding your visit to Vancouver. Please contact us if you are interested in a travel or visitors package to our clinic.

Click here to continue reading directly from the False Creek Healthcare Center website.



Stuart's role in MS Awareness (this week) on Internet Radio

This mention really has nothing to do with my MS but it does show you that I do what I can to discuss and let others know about this disease that so many of us, live with.

Stuart Schlossman on Internet Radio on March 16th, 2010

Click here: http://www.thejorgerodriguezshow.com/archives/ - and then on the March 16th archives. I was on during his 12-1pm time-slot so it will be easy to find what I spoke about.

Yes this is a talk show but 'they', not wanting to sound NPR-ish - do it more slapstick-ish and because it is internet radio, they Jorge and others on SoFloRadio - do not need to adhere to FCC guidelines.

The first 3 minutes can be skipped through as it's all music. But then It's them and me for the next 58 minutes except for a few (4-5) minute breaks

Listen to it all if you want and please do not tell me that I sound like I was yelling.. I think they had my microphone on too loud.

Lots of Comedy is thrown in as well... A Slapstick approach....

After the first break we discuss the medications, choices, then symptoms -- then I really don't remember - enjoy -- MUCH was covered concerning Multiple Sclerosis and so I hope that this new way of providing information will help some and hopefully to create awareness too..

Bada Bing, bada- boom

Comments would be appreciated, so come back to this blog posting and tell me what you thought of the program. Should I try to do more of this style program?



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For those that do not know, I too have Multiple Sclerosis. It was when I was diagnosed years ago, that I got heavily involved with providing MS information for those that had diffiuclty on knowing where to learn and be educated with this illness. Now I empower tens of thousands of people with MS Knowledge. Please register at: http://www.msviewsandnews.org

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CCSVI Treatments Halted at Stanford After Two “Adverse Events”

Written By Julie Stachowiak, Ph.D., of about.com

March 16, 2010

Let me start by mentioning that these procedures involved placing stents in the jugular veins, NOT the procedures that were performed using balloon angioplasty only.

Many of us living with multiple sclerosis (MS) have been following the stories around chronic cerebrospinal insufficiency (CCSVI), a new theory which purports that the root cause of MS may lie in veins that are narrowed, blocked or deformed not allowing blood to drain from the brain in a normal flow. Since this seems to be a mechanical problem, it would make sense that by fixing the veins to improve the flow would be a logical step.

Sure enough, some doctors have been doing just this. The doctor who "discovered" the CCSVI-MS link, Dr. Paulo Zamboni, has performed an operation that he calls the "Liberation Treatment" on several patients in Italy. As far as I can tell, all of the procedures performed by Dr. Zamboni have involved balloon angioplasty (aka percutaneous transluminal angioplasty) only and not stents.

However, several people in the US had operations performed at Stanford University to address their CCSVI situation. Many of these procedures involved placing a stent - a small wire mesh tube designed to keep the veins open and blood flowing - in their jugular veins.

Following their procedures, one patient died from a brain hemorrhage (in August 2009) and another had to have emergency open heart surgery after a stent dislodged and traveled to the right ventricle of the heart (in November 2009). Both procedures were performed by Dr. Dake at Stanford.

As of this moment, CCSVI treatment at Stanford has been halted. There has been outcry about this, with many people saying that the treatment should continue.

Clearly, a stent migrating to the heart is pretty much irrefutably linked to placing the stent in the body in the first place. Stents are really intended for arteries, which carry blood away from the heart and get wider further away from the heart. Veins carry blood to the heart and get wider toward the heart, meaning that stents that get dislodged can travel into the heart (as this one did).

However, the death due to cerebral hemorrhage is not as clearly linked to the procedure in the minds of some people. In fact, her family members and many friends are adamant that the procedure itself had nothing to do with Holly's death. They claim that her death was instead a result of an adverse reaction to the prescribed blood thinners, due to a genetic condition.

What do you think? Should the procedures be halted until more research has been done or should people continue to be able to decide to get this procedure? Share your opinion in the comment section below.

Click here to leave a comment on Julie's blog or leave your comment please at this blog posting and I hope that Julie will check-in

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Yes, 'MS Views and News' is GLOBAL. From ANYWHERE in the World - If You are affected By Multiple Sclerosis and want to know more of MS, CCSVI, Stem Cell issues and more, as either the patient, a caregiver or a friend, and want to remain up to date with ms information, then please register at this website: http://www.msviewsandnews.org - to receive our weekly MS related, e-Newsletter. - thank you

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STAY INFORMED ABOUT MULTIPLE SCLEROSIS AND HEAR PERSONAL STORIES FROM OTHER PEOPLE WITH MS

If you are looking to learn more about MS therapies, the TYSABRI Hope and Health Teleconference Series may help you make a more informed treatment decision.

Many teleconference programs will be offered in 2010.

Log on to hear a physician discuss treatment information and to hear a panel of TYSABRI patients share their personal experiences. Ask them questions directly, or just listen to the discussion — all in the comfort of your own home.

Registration is easy — at no cost to you.

Sign up for free to learn more!


Indication

TYSABRI is a prescription medicine approved for adult patients with relapsing forms of MS to slow the worsening of disability that is common in patients with MS and decrease the number of flare-ups (relapses). Because TYSABRI increases the risk of progressive multifocal leukoencephalopathy (PML), a rare brain infection that usually causes death or severe disability, TYSABRI is generally recommended for patients that have not been helped enough by, or cannot tolerate, another treatment for MS. TYSABRI does not cure MS and has not been studied for longer than two years or in patients with chronic progressive MS.


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Wednesday, March 17, 2010

Wheelchair Kamikaze's Liberation Treatment Exploration

written by Marc Stecker ( the Wheelchair Kamikaze) - March 16, 2010

Last Wednesday, I underwent the "Liberation Procedure" treatment for CCSVI.

Unfortunately, although vascular abnormalities were found, they couldn't be fixed via balloon angioplasty, so I now know I have one blocked jugular and stenosis in my azygos vein, but no current way of correcting the problems...

Anyway, I posted my experiences with the procedure, as well as the results (illustrated with x-ray photographs) to Wheelchair Kamikaze, and I think the article would be of interest to your readers.

Here's the link:

http://www.wheelchairkamikaze.com/2010/03/details-on-my-ccsvi-procedure.html




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Monday, March 15, 2010

A study, much needed for determining long term usage of Tysabri®

IN Stuart's own words, "I believe the purpose of this study is to see if stopping the use of Tysabri and then the re-start is to determine if for example - if a patient has had 24 infusions and then is taken off Tysabri for 6 months, when they re-begin using Tysabri, are they re-beginning with infusion #25 or is their system re-booted causing them to now begin again with infusion #1.
A study much needed for determining long term usage of the medication".





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Patient Walking with Dignity: Israeli "Exoskeleton Suit" Enables Paralyzed People To Walk

After being paralyzed for the past 20 years, Radi Kaiof began to walk down a street in Israel to the sound of a dim mechanical hum. That was the sound of an electronic exoskeleton, developed by a small Israeli high-tech company, propelling the 41 year old paraplegic down the street with a proud expression on his face. The device, called ReWalk, is the brain child of engineer Amit Goffer, founder of Argo Medical Technologies.


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Stenting Jugular Veins presentation by Prof. Dake's presentation on CCSVI - "a work in progress"

Ann Carol (and many others) sent me a newly released video on CCSVI

Hi Stuart, 3.14.10
I just came across this video on Youtube and thought I would send you a quick tip about it. Appartenly Dr. Dake of CCSVI fame gave a presentation this morning at a conference of interventional radiogists on the topic of CCSVI. The video is just the first part of his presentation (perhaps someone will download the rest at a later point). But I found it both interesting and encouraging that Dr. Dake is spreading the word to his fellow radiologists.

Here is the link in case you would like to have a look at it..

http://www.youtube.com/watch?v=_IuuJKuZiKg (part two- provided by Rusty)


Thanks also for your blog and newsletter. They have become a one stop shop for me on the latest MS news.
all the best,
Ann

My Thanks to Ann and the many others who sent this link to me in the last 24 hours....
It's good to see people getting involved.

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Multiple sclerosis turns the tables on Portland oncologist, as patients become caregivers

By Katy Muldoon, The Oregonian

March 13, 2010, 11:47AM
How a visitor hauling a 40-pound Everlast punching bag got past the nurse's station without being noticed is a mystery, but the woman proceeded straight to Devon Webster's hospital bed. She helped Webster lace on red boxing gloves and waited for her to take a swing.

Webster, a prominent Portland oncologist, had been unable to speak, swallow or see clearly for weeks. Her balance was gone. Her right arm, quivering with a tremor, was useless. Her face drooped.

The multiple sclerosis flare-up was so severe that Webster, 41, didn't know whether she'd walk again or be able to live independently. More than anything, she remembers desperately wondering if her ailing body would cut her off permanently from the work that fills her life: treating breast cancer patients and searching for a cure.

With little warning, she'd gone from doctoring to needing doctors. Current and former patients pushed through the door of her hospital room atProvidence Portland Medical Center, offering the sort of good wishes and help that Webster typically offered them.

Was it OK, she wondered, to let patients see her at her most vulnerable, even though they were vulnerable themselves? Was it ethical to accept their help?

READ MORE and watch video by clicking here

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Boy Scouts do housework for people with MS


A group of boys banned together to help local people living with the debilitating disease Multiple Sclerosis. They may not know the people personally, but they do know the struggle with MS.

On Saturday afternoon in southwest Bakersfield a group of boys frantically worked on a house to clear weeds, and groom plant beds.

No, they aren't getting paid, and no they are not being punished. On the contrary, they are being rewarded, emotionally. “My aunt has MS so it's kind of personal for me. I'm kind of doing this for her,” volunteer Kendrick Crabtree said.

James O'Rourke is the mastermind behind this project, called MS Service Day. His mother suffers from multiple sclerosis. “She can't get around too well anymore and she's mostly in bed most of the time. I miss doing stuff with her,” O’Rourke said.

O'Rourke is trying to earn his eagle badge for the Boy Scouts and wanted to give back to those who are going through what his family is going through. He arranged for several teams of boys, mostly Boy Scouts, to go around Bakersfield, completing home improvement projects, painting, and doing yard work for people with MS.

William Jensen is one of the people who they are helping. He has suffered from MS for five years says he has little mobility. “It's hardly anything. I can't walk anymore,” Jensen said. “I feel like I can help those who can't help themselves. I feel like I can do something for others. It's gives me a good feeling,” Crabtree said.


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