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CHAMPIONS TACKLING MS - AWARDS Dinner, Honoring Aaron Boster, MD and Jon e. Glaser, DDS - now open for registration. Visit www.events.msvn.org
Saturday, December 19, 2009
Friday, December 18, 2009
I wasn't looking. Just pointing
This video webcast series explores:
- Understanding PediatricMS
- What Can I Do to Help My Child?
- What Is Being Done
Thursday, December 17, 2009
Breaking News: US MS Society sends out a request internationally for grant applications to pursue the CCSVI lead
Source: National MS Society
Updated December 16, 2009
Summary: Recent reports are calling attention to the idea that a phenomenon called CCSVI, a reported abnormality in blood drainage from the brain and spinal cord, may contribute to nervous system damage in MS. This hypothesis has been put forth by Dr. Paulo Zamboni from the University of Ferrara in Italy. Based on the results of his initial preliminary findings, Dr. Zamboni states that this pilot study warrants a subsequent larger and better controlled study to definitively evaluate the possible impact of CCSVI on the disease process in MS.
It has been proposed by Dr. Zamboni, but not yet proven, that CCSVI may be corrected through endovascular surgery, which involves inserting a tiny balloon or stent into blocked veins in order to permit the flow of blood out of the brain and spinal cord, a procedure that has been called “liberation therapy” in some reports.
The National MS Society is undertaking the funding of new research on CCSVI in MS and has invited investigators worldwide to apply for grants that would explore this lead. These applications will undergo an accelerated review process by an international panel being convened in cooperation with other MS Societies to ensure an expedited, coordinated response. If this hypothesis is confirmed, it may open up new research avenues into the underlying pathology of MS and new treatment approaches to therapy.
Background: In a recent study by Dr. Zamboni and colleagues, the team evaluated abnormalities of blood outflow in major veins draining from the brain and spinal cord to the heart in 65 people with different types of MS, compared with 235 people who were either healthy or who had other neurological disorders. They used sophisticated sonography techniques to detect abnormalities of venous drainage. The investigators reported evidence of slowed and obstructed drainage in the veins draining the brain and spinal cord in many of those with MS. They also found evidence of the opening of “substitute circles” – where the flow is deviated to smaller vessels to bypass obstructions, and these were often found to have reverse flow (reflux) of blood back into the brain.
This news feed was provided to Stuart Schlossman, directly from the Nat'l MS Society
Wednesday, December 16, 2009
If you, like me, watch the TV show "House," you'll be familiar with the concept that tumors in the body can over-secrete all kinds of substances which can cause baffling symptoms (baffling to the doctors on "House," anyway!). Here's a very interesting case study of that exact phenomenon in a man diagnosed with MS. (This link should lead to an open-access copy if you'd like to read the article for yourself.)
As the case study describes, the man went to the doctor at age 32 with symptoms of optic neuritis and leg weakness. MRI imaging revealed demyelinating lesions as well as a tumor on his pituitary gland (an adenoma) that was secreting excess prolactin. Prolactin is a hormone that stimulates the production of breast milk, but it can also have strong effects on the immune system (both stimulatory and inhibitory effects depending on other factors). CSF testing also revealed the presence of oligoclonal bands, a strong diagnostic marker of MS. The man's tumor was removed and he remained MS symptom-free and prolactin-normal for the next 12 years. Then the tumor came back, his prolactin levels rose, and he simultaneously developed new MS symptoms and MRI lesions. The man is now being treated with a prolactin-lowering drug, and has been in remission apart from one breakthrough episode of high prolactin levels and new MS lesions.
Although suppressing prolactin in this man correlated with suppression of his MS activity as well, it's hard to generalize this example to others with MS. Interestingly, prolactin levels in pregnant women reach levels that are many times higher than reported in this case study, and pregnancy and breastfeeding are both associated with lower relapse rates in women with MS. Furthermore, case-control studies have not found significantly higher levels of prolactin in people with MS. Still, unusual cases like this can sometimes be very informative -- so understanding why prolactin seems to be such a strong MS trigger in this man could lead to new insights about MS.
Tuesday, December 15, 2009
VANCOUVER - A private clinic in Vancouver is being deluged by multiple sclerosis patients from across Canada and the U.S. who have heard about an Italian study that may revolutionize the way the disease is treated or possibly even cured.
The False Creek Surgical Centre has nothing to do with the Italian research, but co-owner Dr. Mark Godley said that for $2,300, it is offering patients an MRI and ultrasound that may indicate whether they’re candidates for the type of treatment described in the Italian study.
Such testing is not available in the public health sector. While the False Creek clinic does the imaging, it does not do the surgical intervention.
The recently published study shows that multiple sclerosis (MS) may actually be a vascular disease triggered by disruptions in blood circulation.
Its theory is that MS is caused by venous abnormalities at the base of the brain and that a “liberation procedure” (balloon venoplasty done on veins, like angioplasty done on arteries) could treat or even possibly cure patients.
Before such procedures, imaging tests looking for narrowing or blockages of veins (stenosis) must be done, since lead researcher Dr. Paolo Zamboni maintains such abnormalities are almost always associated with MS.
by David Prentice
December 14, 2009
The latest success story comes from Australia. Ben Leahy, 20, was in a wheelchair and experiencing vision problems when he was treated earlier in 2009. Ben is now walking after treatment with adult stem cells. The treatment involves isolating the patient’s bone marrow adult stem cells, giving the patient mild chemotherapy to destroy the rogue immune cells that are attacking the nervous system, then re-injecting the patient’s adult stem cells.
While the Australian group has not yet published their results, the technique mirrors the treatment results published in 2009 in Lancet Neurology by Dr. Richard Burt’s team at Northwestern, where they reported that they had reversed the neurological dysfunction of early-stage multiple sclerosis patients.
As Dr. Burt noted:
“This is the first time we have turned the tide on this disease.”
CLICK HERE to continue reading and to watch MS Patient videos of this treatment
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Monday, December 14, 2009
Masters of MS Alert
New Multiple Sclerosis Expert
Topics: Discussing CIS, Secondary Progressive MS, Emerging Therapy Trials
Master: Howard L. Zwibel, MD
Thank you for signing up to receive the monthly update for the Masters of MS website.
This month’s expert is Howard L. Zwibel, MD, Medical Director, Multiple Sclerosis Center at Doctors Hospital, Coral Gables, Florida on the topics: Discussing CIS, Secondary Progressive MS, Emerging Therapy Trials
Try it now by clicking here www.mastersofms.com.
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An Australian man appears to have made a remarkable recovery from multiple sclerosis after receiving new stem cell treatment.
Ben Leahy, 20, was diagnosed with the disease in 2008 and ended up in intensive care at one point with respiratory failure after his condition deteriorated rapidly.
He was in a wheelchair and also had sight problems when he underwent the procedure earlier this year but today he is walking and recovering well.
Australian doctors removed stem cells from Ben's bone marrow, then used chemicals to destroy all the existing immune cells in the body before re-injecting his stem cells.
ACT neurologist Dr Colin Andrews says the positive results in Ben have surprised doctors.
"At the moment there's a good chance we may have arrested the disease," he said.
What is Chronic cerebrospinal venous insufficiency (CCSVI)?
Chronic cerebrospinal venous insufficiency is described as a chronic problem (ongoing) where blood from the brain and spine has trouble getting back to the heart.
It is caused by a narrowing in the veins (stenosis) that drain the brain and the spine. Blood takes longer to return to the heart, and it can reflux back into the brain and spine or cause oedema and leakage of red blood cells and fluids into the tissues of the brain and spine.
Blood that remains in the brain too long creates a delay in deoxyginated blood leaving the head ("slowed perfusion"). This can cause hypoxia, a lack of oxygen in the brain. Plasma and iron from blood deposited in the brain tissue can also be very damaging leading to iron along with other unwelcome cells, to cross the crucial brain-blood barrier.
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Novartis AG is jockeying with German drug maker Merck KgaA to deliver the first disease modifying treatment for relapsing forms of multiple sclerosis that can be taken orally, rather than by infusion or injection.
On November 30, US regulators issued a "refusal to file letter" to Merck Serono, the US subsidiary. Company spokesman Gangolf Schrimpf told me the FDA preliminary action of the cladribine submission was not an assessment of the efficacy and safety of the compound. Nonetheless, the agency obviously felt the deficiencies in the filing were material enough - scientific or legal - to delay its formal review of the tablet.
Initial results from Novartis' two-year FREEDOMS FTY-720 study show that once-daily oral fingolimod reduced the relapse rate by 54 percent for the 0.5 mg dose in patients with relapsed MS. Novartis looks to file its new drug application with the FDA within next few months, followed fast track approval and launch in summer 2010.
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Sunday, December 13, 2009
Published: December 13, 2009
In the span of just a few years, Brian Lang went from walking on his own to needing a cane, a quad cane and then a walker.
He's now in a wheelchair.
Although multiple sclerosis robbed him of the use of his legs, it's not stopping him from helping others. The Hazleton man meets with others who are disabled in hopes that they'll find a level of independence they're comfortable with.
"I know what (disabled) people are going through," said Lang, of Hazleton.
As a peer mentor for the Anthracite Region Center for Independent Living, Hazleton, he visits handicapped individuals who are in nursing homes to let them know they can be mostly self-sufficient in their own home or apartment.
"It's very rewarding work," he noted.
Lang has been in a wheelchair since 2005, a few years after doctors diagnosed him with multiple sclerosis. He was also diagnosed with Lyme Disease that year, a disease that's spread through bites from deer ticks.
Have you or a loved one been denied Complex Rehab Equipment that would enable a healthier, happier and higher quality of life?
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If this scenario sounds familiar and you would like to get involved and help change the way the government reimburses for Complex Rehab Equipment, click here and apply for a Consumer Scholarship to the CELA conference in April 2010.
This is an expenses paid trip to Washington, DC where you can tell your story in person to members of Congress on Capitol Hill. Your involvement will help change the government’s perspective for you and others with disabilities.
To apply for your CELA expense paid scholarship to Washington, DC click here.
To learn more about CELA 2010 click here.
New Mobility writes: Thank you and we look forward to hearing from you.============================================
By Allison Cerra
DEERFIELD, Ill. (Dec. 10) Walgreens Specialty Pharmacy, a subsidiary of Walgreens, was chosen to participate in the "Therapy Optimization in Multiple Sclerosis" study, a two-year medical research study sponsored by Teva Neuroscience.
The goal of the study is to demonstrate how a specialty pharmacy-based therapy management program affects adherence, persistency and patient outcomes. Targeted patient outcomes will include relapses, disability progression, quality of life and the ability to perform work and daily activities. Approximately 3,000 patients from Walgreens and other participating specialty pharmacies will be recruited for the study.
“We are honored to participate in the TOP MS Study,” said Ray Tancredi, senior director of trade account management for Walgreens Specialty Pharmacy. “We support efforts to measure outcomes that lead to more effective MS care. Walgreens is committed to this study and to the many patients who rely on us to provide timely medication fulfillment and clinical assistance.”
Walgreens Specialty Pharmacy’s Care team of pharmacists, nurses and care coordinators provides MS patients with personalized support and education to help them get the best results from their therapy. This extensive network of specially trained clinicians helps patients face the many challenges, including side effects, that can make it difficult to stay on track with their medications. Walgreens therapy-specific clinical management programs are designed with those challenges in mind.
"Teva Neuroscience has initiated the TOP MS Study in order to enhance our understanding of issues facing MS patients, which further demonstrates our commitment to the MS community," said MerriKay Oleen-Burkey, project leader, TOP MS Study, Teva Neuroscience. "Walgreens has been selected to partner with Teva Neuroscience on this study, due to its outstanding commitment to MS therapy management."