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Welcome to all who visit this Blog whether you suffer from Multiple Sclerosis or have a loved one who does. Hopefully this will help all who read understand that they are not alone even though MS affects us all in very different ways. Maybe it can help open eyes of those around who do not know the unpredictability of daily life with MS.
The purpose of this blog is to offer support and inspiration. Please feel free to share any useful information that you have gathered along your journey and words of inspiration. It is hard to overcome all the obstacles we must face and it is nice to hear ways people have adapted. Inspirational stories and anectedotes are especially sought after.
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Wednesday, March 9, 2011

New criteria

There is new criteria now for an MS diagnosis which may help those who have all the symptoms but whose doctors won't diagnos them with the disease.  If this criteria had been in place before my lesions began showing up, but while I was having symptoms, I can't help think that maybe my body would be in a better place than it is in today. So frustrating to know this.  This is the article as retrieved from http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=4713

International Panel Revises “McDonald Criteria” for Diagnosing MS


Mar 09, 2011
 An international panel has revised and simplified the “McDonald Criteria” commonly used to diagnose multiple sclerosis, incorporating new data that should speed the diagnosis without compromising accuracy. The International Panel on Diagnosis of MS, organized and supported by the National MS Society and the European Committee for Treatment and Research in Multiple Sclerosis, was chaired by Chris H. Polman, MD, PhD (Free University of Amsterdam). Full details are available in the free-access paper published in the February 2011 issue of Annals of Neurology (Ann Neurol 2011;69:292-302).

“Treating MS early and effectively is likely our best way to prevent permanent damage to the nervous system, so speeding the diagnosis of MS without compromising accuracy is a key goal,” stated National MS Society Chief Medical Officer Aaron Miller, MD, Professor of Neurology and Medical Director of the MS Center at Mount Sinai Medical Center in New York City. “These updated diagnostic criteria appear to achieve this goal.”


The National MS Society is developing materials to help neurologists understand and apply the 2010 revised diagnostic criteria in practice. These include plans to produce pocket cards summarizing the new criteria. (These will be available from the National MS Society’s Professional Resource Center in coming weeks.) Download a Tipsheet (.pdf) for neurologists that summarizes the new criteria.


Background: MS is a chronic, often disabling disease that attacks the central nervous system. Its progress, severity, and specific symptoms are unpredictable and vary from one person to another. Determining if an individual has MS can be difficult because there is no single test that can accurately determine the diagnosis. Generally the process of diagnosis involves obtaining evidence from patient history, clinical examination, a variety of laboratory tests, and magnetic resonance imaging (MRI) scans, all intended to rule out other possible causes of disease and to gather data consistent with a diagnosis of MS. The newly revised 2010 McDonald Criteria incorporate updated information on using MRI as a tool for speeding diagnosis.


The McDonald Criteria for Diagnosis of MS were originally published in 2001. They were named for the chair of the original panel, the late neurologist W. Ian McDonald, MB, ChB, PhD. Dr. Polman chaired the panels responsible for the 2005 and 2010 revisions. The previous versions have been the subject of extensive debate and testing. A significant body of new information about the utility of the Criteria has been published. The International Panel reconvened in May 2010 in Dublin to consider these new data and to develop consensus for revising and updating the McDonald Criteria, with an eye toward speeding and easing diagnosis without compromising accuracy.


Diagnosis of MS - The Basics Still Apply: The diagnosis of MS is a partly subjective process, and is best made by an expert who is familiar with the disease and who can interpret imaging and laboratory evidence that can supplement the clinical diagnostic process. The requirement remains that there must be no better explanation than MS for the clinical and laboratory findings – other possible diagnoses must be considered and excluded. (Read more here, or go to this link for free access to published guidelines on the differential diagnosis of MS - Multiple Sclerosis 2008 14;9:1157-1174)


The key to an MS diagnosis has been, and remains, the objective demonstration of dissemination of typical disease signs and symptoms in time and space. The 2010 revisions maintain this requirement, but offer several ways of using imaging to determine dissemination (see Tipsheet - .pdf). It remains the case that while the use of paraclinical and laboratory examination can speed an MS diagnosis, a solid diagnosis can be made on clinical grounds alone.


No single test can provide adequate information to support an MS diagnosis. Therefore, supportive and confirmatory paraclinical examinations – including analysis of lesions by MRI, of cerebrospinal fluid (CSF), and sometimes of evoked potentials – are still important in helping to confirm an MS diagnosis. The Tipsheet (.pdf) provides additional summary information related to assessing evidence of MS.


What Has Changed: There is new emphasis that the McDonald Criteria should only be applied to those who present with a clinically isolated syndrome (CIS) suggestive of MS, or who have symptoms consistent with a central nervous system inflammatory demyelinating disease. The panel also considered how well the Criteria can be applied to specific populations such as childhood MS (pediatric MS) and Asian and Latin American populations. They concluded that the 2010 Revised Criteria would apply to the majority of these populations, but the paper describes specific situations in which further considerations and tests would be recommended to properly diagnose MS in these groups.


In past versions of the McDonald Criteria, guidelines were presented for using MRI to demonstrate dissemination of disease in time and space, based on earlier studies. For the 2010 Revised Criteria, published recommendations from the European MAGNIMS multicenter collaboration have been incorporated (Swanton JK, Rovira A, Tintoré M, et al. Lancet Neurol 2007;6:677-686; Swanton JK Fernando K, Dalton CM, et al. J Neurol Neurosurg Psychiatry 2006;77:830-833.) These indicate that:


Dissemination in time can be demonstrated by a new T2 or gadolinium-enhancing lesion on a follow-up MRI, with reference to a baseline scan, regardless of when the baseline MRI was obtained. (Previous versions had specified that the reference scan be performed at least 30 days after the initial clinical event; this is no longer a requirement.)


Dissemination in space can be demonstrated with at least one T2 lesion in at least two our of four areas of the central nervous system: periventricular, juxtacortical, infratentorial, or spinal cord. These lesions need not be gadolinium enhanced.


In the case of diagnosing primary-progressive MS, aspects of the previous criteria remain, but the MAGNIMS recommendations for demonstrating dissemination in space were incorporated to harmonize with other 2010 updates. As shown in Table 1, diagnosing primary-progressive MS requires one year of disease progression (determined retrospectively or prospectively), plus at least 2 out of these 3 criteria: dissemination in space in the brain based on at least 1 T2 lesion in periventricular, juxtacortical or infratentorial regions; dissemination in space in the spinal cord based on at least 2 T2 lesions; or positive cerebrospinal fluid (CSF) findings.


While the International Panel has provided revised and simplified criteria for MS diagnosis, recommendations for further testing of the Criteria are made as well, to bolster the scientific evidence supporting the 2010 recommendations.


Comment: The 2010 Revisions to the McDonald Diagnostic Criteria for MS should speed and make easier and more certain the diagnosis of MS. As with the original Criteria, these need prospective study, and it is expected that additional research will result in further refinements.


“Efforts like the work of this international panel illustrate the National MS Society’s role as a convening force to push forward progress that not only improves clinical care, but also identifies research opportunities and gaps,” noted Timothy Coetzee, PhD, the Society’s chief research officer. “The paper highlights the need for research to identify additional biological markers of MS and its subtypes. This gap impedes progress on several fronts, making it an important target for our research efforts,” he continued.




Monday, March 7, 2011

Research Study

This is the research study I am involved in.  I have been on the study drug or placebo since September.  If you want contact information, go to the National MS society website (link is on blog).  Article below was retrieved from National Ms Society website.

MS Trial Alert: Clinical Trial of Sex Hormone Estriol Recruiting Women with MS to Participate - Updated

Summary: The National MS Society is funding a team of investigators at 15 medical centers to conduct a two-year, controlled clinical trial of an estrogen (estriol) added to standard therapy to treat MS. Investigators administer either oral estriol along with Copaxone® (glatiramer acetate, Teva Pharmaceutical Industries Ltd.) or Copaxone plus inactive placebo to 150 women with relapsing-remitting MS. If successful, this clinical trial could lay the groundwork for a larger, definitive trial that could lead to a new treatment option for women with MS, an option that would be a pill, not an injection. Importantly, the exclusion criteria for the study have recently changed, such that patients previously treated with an interferon or Copaxone will no longer be excluded.


Sixteen Centers Recruiting Patients: The estriol trial is taking place at 15 medical centers across the U.S. Women between 18-50 who are diagnosed with relapsing remitting MS and are interested in participating in this clinical trial should contact the nearest site to discuss their eligibility:


This study, costing more than $5 million, is being funded by the National MS Society – through the support of the Southern California Chapter and other chapters and private donors – and the National Institute of Neurological Disorders and Stroke. Adeona Pharmaceuticals is providing drug for the trial.


Rationale: Estriol levels rise to very high levels naturally during late pregnancy, a time when most women’s MS disease activity declines. This led some to suspect that estriol may be responsible for this easing of symptoms during pregnancy. Dr. Rhonda Voskuhl (University of California, Los Angeles) and others explored this lead in mice with MS-like disease, and later, with National MS Society support, Dr. Voskuhl conducted a small, early-phase trial of estriol in 12 women with MS. Results in mice showed that estriol treatment was indeed protective. Results in the pilot trial showed that estriol treatment decreased disease activity in women with relapsing-remitting MS.


According to Dr. Voskuhl, the trial principle investigator, in using estriol they “aim to simulate some of the disease protection offered by pregnancy. We are very enthusiastic about this new agent since it has decades of known safety and since it will be given as a pill, not a shot.” She further states, "Estriol treatment also has the potential to be more potent in halting disability in MS, since estrogens have been shown in animal models to be not only anti-inflammatory, but also to directly reduce brain injury."


Trial Details/Eligibility: The two-year study is a double-blind, placebo-controlled trial that will take place at 15 sites in the U.S. (listed above). Investigators will administer estriol in pill form to women between the ages of 18-50 who have a diagnosis of relapsing-remitting MS. The oral treatment will be given in combination with subcutaneously injected Copaxone, a standard treatment for MS, for 2 years. The team is evaluating effects of the treatment combination on relapse rates and several clinical and magnetic resonance imaging measures of disability progression.