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Monday, February 8, 2010

CCSVI As Cause of MS




Purpose of this website is to explore the hypothesis, and spread awareness on:
CCSVI - Chronic Cerebro-Spinal Venous Insufficiency

Recently proposed as the cause of Multiple Sclerosis.
Diagnosis: Cranial & Neck imaging (CT-Venography, Magnetic Resonance Venography (MVR) or Doppler).

Treatment: Angioplasty or stents for jugular stenosis, to restore blood flow out of brain.

My Stenosis: I had corrective stent procedure Oct 2009 at Stanford.
Details in my blog (updated 01/25/2010) and images. More about me.

Alert 12/9/09 - CCSVI Procedures on hold:

  • Procedures on hold in USA, intervention trials beginning.
    • USA: Stony Brook, Georgetown, Duke, Stanford, Univ. South Carolina, The Vascular Group, Albany, NY
      Canada: Univ. Bristish Columbai, Hamilton/McMaster.
    • Watch for results early 2010 from CTEVD Study Jacobs Neurological Institute, University at Buffalo. Latest news.
  • What you can do to prepare:
    • Make a transition plan with your doctor if using MS immune suppression therapy, in case CCSVI theory is correct.
    • Find a local vascular doctor or interventional radiologist. Doctor list that treats a similar condition, CTOS.
    • You have a right to proper diagnosis, even if treatments are on hold for now. See resources and scan protocols below.
    • Make a post-procedure recovery care plan, based on current level of disability, then a rehab plan to regain functionality.
  • Action you can take to speed the research
  • What you can do to feel better & slow MS progression while the CCSVI research gets started:
    • Try calming your immune system's reaction to CCSVI damage with Low Dose Naltrexone therapy.
    • Pick your favorite MS diet and stick with it. Quit eating sugar and fructose (Sugar: The Bitter Truth H. Lustig, MD, UCSF).
    • I've tried all of the above and found them to be effective. I've been at this long enough to give advice, so there you have some!

Media Coverage

Research / Clinical Evidence / What is CCSVI?

Patient Evidence, Experiences & Support

What The MS Societies & Doctors Are Saying

Where You Can Get the Diagnostic Scans

First contact your MS doctor, and ask when they will begin CCSVI scans.
Have the radiologist coordinate with a doctor familiar with CCSVI, so the right scans are done.
Let the patient coordinator contact your insurance provider for pre-authorization.

Diagnostic Scans, & Corrective Procedures (stent/angioplasty) have been performed at:

  • USA, CA: Stanford University, Dr. Michael Dake. Patient Coordinator: (650) 725-3806
    • As of 12/09/09 procedures no longer available, but you can register for clinical trial starting 2010.
  • Canada: As of Dec 2009, University of British Columbia is seeking to fund a CCSVI trial.
  • Italy: University Bologna Hospital, Dr. Zamboni
  • Ireland: Royal Victoria Hospital, Belfast, Drs Anton Collins, Robin Baker
  • Poland: Dr. Simka, website. Email contact preferred, mariansimka@poczta.onet.pl

Facebook
CCSVI in Multiple Sclerosis
CCSVI at UBC MS Clinic - Information and Support
Buffalo CCSVI Study
CCSVI & Multiple Sclerosis - a cure?
CCSVI in MS Toronto
ms-ccsvi-uk
CCSVI & Multiple Sclerosis - a cure?
Esclerosis Múltiple Venosa (CCSVI)
CCSVI nella Sclerosi Multipla
Sclérose en Plaques Veineuse (CCSVI)
Veneuze Multiple Sclerose (CCSVI)
Venöse Multiple Sklerose, CVI & SVI, CCSVI

Saturday, February 6, 2010

Friday, February 5, 2010

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Fish oil supplements 'beat psychotic mental illness'

Fish oil capsules
The capsules are rich in omega-3

Taking a daily fish oil capsule can stave off mental illness in those at highest risk, trial findings suggest.

A three-month course of the supplement appeared to be as effective as drugs, cutting the rate of psychotic illness like schizophrenia by a quarter.

The researchers believe it is the omega-3 in fish oil - already hailed for promoting healthy hearts - that has beneficial effects in the brain.

A "natural" remedy would be welcomed, Archives of General Psychiatry says.

"The finding that treatment with a natural substance may prevent, or at least delay, the onset of psychotic disorder gives hope that there may be alternatives to antipsychotic drugs," the study authors said.

If young people can be treated successfully with fish oils, this is hugely preferable to treating them with antipsychotics
Alison Cobb
Mind

Antipsychotic drugs are potent and can have serious side effects, which puts some people off taking them.

Fish oil supplements, on the other hand, are generally well tolerated and easy to take, say the scientists.

The international team from Austria, Australia and Switzerland tested the treatment in 81 people deemed to be at particularly high risk of developing psychosis.

Natural choice

Their high risk was down to a strong family history of schizophrenia, or similar disorders, or them already showing mild symptoms of these conditions themselves.

For the test, half of the individuals took fish oil supplements (1.2 grams of omega-3 fatty acids) for 12 weeks, while the other half took only a dummy pill. Neither group knew which treatment they were receiving.

Dr Paul Amminger and his team followed the groups for a year to see how many, if any, went on to develop illness.

Two in the fish oil group developed a psychotic disorder compared to 11 in the placebo group.

Based on the results, the investigators estimate that one high-risk adult could be protected from developing psychosis for every four treated over a year.

They believe the omega-3 fatty acids found in the supplements may alter brain signalling in the brain with beneficial effects.

Alison Cobb, of the mental health charity Mind, said: "If young people can be treated successfully with fish oils, this is hugely preferable to treating them with antipsychotics, which come with a range of problems from weight gain to sexual dysfunction, whereas omega-3s are actually beneficial to their general state of health.

"These are promising results and more research is needed to show if omega-3s could be an alternative to antipsychotics in the long term."


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SALT LAKE CITY (ABC 4 News) At the end of November a young mother kissed her children goodbye, and boarded a flight with her husband. It was the beginning of a medical journey that she believes has ended with miraculous results. Michelle Colledge was treated for severe Multiple Sclerosis at Johns Hopkins, in Baltimore Maryland. She is just one of 44 patients to receive the experimental High Dose Cyclophosphamide, and may be the last.

Michelle’s husband says his wife’s MS was so severe that several times he was told to prepare for her to die. Current medications available to treat Michelle had failed. Unwilling to give up hope, they researched until they found the work being done at Johns Hopkins. It was that discovery that Michelle Colledge says saved her life, and gave her life. “It feels miraculous to me. I feel like Lazarus rising from the dead. Like was dead, and a prisoner inside my own body and now I am living again.”

In order for Michelle to live, her immune system had to die. At Johns Hopkins, she says she received the High Dose Cyclophosphamide, an older and stronger form of chemotherapy. Thirteen liters, over a course of four days, killed all of her white blood cells. She says,” I like to think of them as assassins. So, they had these instructions that were not correct, that said the brain and the spine was the enemy. So, we killed all of those cells.” Her new immune system took about three weeks to grow. Adam Kaplin M.D, PhD, at Johns Hopkins explains, “It’s a resetting of the whole immune system and these people really genuinely have a new immune system.” That immune system has no memory of MS and no longer attacks the brain and spinal chord.

Michelle says she noticed a difference within days of receiving her last chemo treatment. “The sixth day I could tell. There was clarity to my mind that hadn’t been there in about ten years. It was brilliantly clear, almost sensory overload. It’s like living in a black and white world and then all of the sudden there are all of these colors and noise.” By December 22nd, her white blood cell count was up, and her immune system strong enough to go home to her family in Utah.

As weeks pass, there have been other life changing improvements. Michelle says sensation has returned. “Losing the ability to feel things is just so devastating. About two weeks after I got back, my husband rubbed my back, just to say goodnight, and I was like hold on, I can feel that!” Michelle says she can now feel hot and cold and no longer has to ask her youngest daughter to check her bathwater with a finger before getting in. She is knitting to help her hands rehabilitate, has taught her little girl to ride a bike, and takes pleasure in the everyday mundane tasks of life. “I’m driving, filling up the gas tank, making dinner. Things that everybody takes for granted, I can do now.”

Michelle’s reversal of symptoms is not uncommon with the High Dose Cyclophosphamide treatment, ninety percent of those who have had it have no evidence of the disease, and forty percent have show improvement in function. Dr. Kaplin says “If you can turn off the inflammation, really stop the immune system from its constant picking at the brain and spinal chord, then there is a healing process.”

But it’s a process that may no be available to others. Large scale clinical trials cost millions and right now, study of the treatment is unfunded. Pharmaceutical companies are not interested in funding it because the patents on the medications being used has already lapsed and there is no money to be made. The National MS Society says it has not been approached to fund the trials needed for FDA approval. Johns Hopkins says it did submit a grant request several years ago but was denied. It hopes to put forth another request in the coming year. A spokesperson says because of the economy donations are down, and it’s uncertain there would be the money needed to fund the Johns Hopkins study. Meanwhile, there is a grass roots effort to bring this treatment to those with MS. You can find out more, and contribute by going to www.cureforms.org

Biogen Starts Human Trial For Drug That Could Repair MS Damage1-27-10 10:46 AM EST

NEW YORK -(Dow Jones)- Biogen Idec Inc. (BIIB) has begin human testing of an experimental drug, dubbed BIIB033, that it hopes will take the revolutionary step of repairing some of the damage done by multiple sclerosis.

Although it is a major step to begin testing in humans, drug development is always risky and it will take years to measure the drug's effectiveness and potential side effects.

Multiple sclerosis, or MS, is a chronic, inflammatory condition that occurs when the body attacks its own myelin, the protective insulation surrounding the nerve fibers, or axons, in the central nervous system. The debilitating disease affects an estimated 400,000 people in the U.S., according to the National MS Society, but current treatments only aim to slow the disease's progression and cannot help repair damage.

Research that focuses on ways to help the body regenerate myelin is growing and scientists around the world are taking several different approaches. Damage to myelin can distort or block messages carried by axons and result in a wide variety of MS symptoms such as vision problems, limb numbness and paralysis.

BIIB033 is an antibody designed to turn off Lingo-1, a molecule that the company believes prevents myelin production in adults after axons are well covered. Blocking Lingo-1 may encourage myelin regeneration, something that occurs in healthy adults, after damage from MS occurs.

The antibody has been shown to be effective in mouse models that are accepted as being useful for mimicking the properties of MS.

The small Phase I study will include 64 healthy volunteer adults in the Netherlands, with the main goal of assessing safety and tolerability, and is expected to be completed in 2011.

The placebo-controlled study will give patients a single dose of the drug and different groups will get different amounts, a standard practice in such early trials that helps determine the optimal dose for later investigation.

The secondary goals of the trial relate to how the body processes the drug and there is no measure of its effectiveness, which is not surprising in such an early study that doesn't actually include MS patients.

MS is an attractive area of drug makers as its often requires lifelong treatment, and MS drugs brought in more than $8.7 billion in 2009 revenue worldwide, according to projections from Bernstein Research.

Biogen is mostly focused on selling MS treatments, including Avonex and Tysabri, which are expected to bring sales of more than $3 billion for 2009.

http://www.bnac.net/wp-content/uploads/2010/02/bnac_newsletter_02-04

This is very good, a great deal of information, a must read!! Go to link in the title bar.

Thursday, February 4, 2010

www.youtube.com
A recent discovery by Dr. Zamboni in Italy has intrigued researchers at the University of Buffalo, NY, McMaster University in Hamilton, Ont., and the University of British Columbia. There is a section of an article discussing UBC's involvement in CCSVI research below, as well as a few donation