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elly wrote:I need to say that i do like to hear anything positive about ms...anything that can give me hope that a good outcome is a possibility.

No matter what the statistics say etc i choose to believe that i will be fine, even if that's somewhat naive. I'm certainly not going to go out and buy a wheelchair in case i need one in 20 years. I'm not planning for the worst.

That sounds like a very healthy attitude elly.

Not that there is even one good thing about having MS but fair or unfair, that's the reality you find yourself in and as far as can be proven, you only are going to have this one life to live. Your only real choices are to do your best to enjoy your one life, or let MS win.

elly wrote:I would like to know where they get this information from...do they make it up as they go along or is it something that has been researched and these are the results.

Obviously through the years there have been lots of people with MS who have passed on and some of those records available to researcher were evidently detailed enough to document the way the disease presented itself in the beginning and disease course through the years. When it comes to MS, one example means nothing, 50 doesn't mean much, the average of a thousand is starting to present pretty good evidence but NOTHING can predict an individual's disease course with certainty.

Actually it's kind of nice to think that there probably will be a satisfactory resolution for MS long before they can accurately predict it's course in an individual.

You might find this interesting http://tinyurl.com/2jntyg

2007 May 8;
Prognosis of the individual course of disease--steps in developing a decision support tool for Multiple Sclerosis.
BACKGROUND: Multiple sclerosis is a chronic disease of uncertain aetiology. Variations in its disease course make it difficult to impossible to accurately determine the prognosis of individual patients. The Sylvia Lawry Centre for Multiple Sclerosis Research (SLCMSR) developed an "online analytical processing (OLAP)" tool that takes advantage of extant clinical trials data and allows one to model the near term future course of this chronic disease for an individual patient. RESULTS: For a given patient the most similar patients of the SLCMSR database are intelligently selected by a model-based matching algorithm integrated into an OLAP-tool to enable real time, web-based statistical analyses. The underlying database (last update April 2005) contains 1,059 patients derived from 30 placebo arms of controlled clinical trials. Demographic information on the entire database and the portion selected for comparison are displayed. The result of the statistical comparison is provided as a display of the course of Expanded Disability Status Scale (EDSS) for individuals in the database with regions of probable progression over time, along with their mean relapse rate. Kaplan-Meier curves for time to sustained progression in the EDSS and time to requirement of constant assistance to walk (EDSS 6) are also displayed. The software-application OLAP anticipates the input MS patient's course on the basis of baseline values and the known course of disease for similar patients who have been followed in clinical trials. CONCLUSION: This simulation could be useful for physicians, researchers and other professionals who counsel patients on therapeutic options. The application can be modified for studying the natural history of other chronic diseases, if and when similar datasets on which the OLAP operates exist.

Bob

I found the abstract to thestudy I had referenced earlier. I agree with the points about predicting for any one person being difficult and that we all need to live our lives now anyway. But if this meta-analysis is accurate, then it may be useful to know, for example, that demographics are not the best clues.
Clinical and Demographic Predictors of Long-term Disability in Patients With Relapsing-Remitting Multiple Sclerosis
A Systematic Review
Annette Langer-Gould, MS, MD; Rita A. Popat, PhD; Stella M. Huang, MS; Kristin Cobb, PhD; Paulo Fontoura, MD; Michael K. Gould, MS, MD; Lorene M. Nelson, PhD
Arch Neurol. 2006;63:1686-1691.
Objective To identify clinical and demographic factors associated with long-term disability in patients with relapsing-remitting multiple sclerosis.
Data Sources We searched the MEDLINE (1966-May 2005), EMBASE, CINAHL, Cochrane, and PsycINFO computerized databases, and reviewed reference lists of retrieved articles.
Study Selection We included studies that examined predictors of long-term disability in patients with relapsing-remitting multiple sclerosis. We excluded studies that did not distinguish relapsing-remitting multiple sclerosis from primary progressive multiple sclerosis, enrolled fewer than 40 subjects, observed subjects for less than 5 years, or collected follow-up information in less than 80% of the inception cohort.
Data Extraction Two reviewers assessed study quality in 4 domains: cohort assembly, definitions and assessments of prognostic factors and outcomes, and statistical methods. One reviewer extracted data on the direction, magnitude, precision, and statistical significance of the effect of each predictor on prognosis.
Data Synthesis Heterogeneity of study designs precluded us from pooling the results of 27 eligible studies. Study quality was limited by cross-sectional design, enrollment of prevalent cases from referral centers, and lack of multivariate adjustment. Sphincter symptoms at onset (hazard ratio, 1.1-3.1), incomplete recovery from the first attack (hazard ratio, 1.3-3.3), and a short interval between the first and second attack (hazard ratio, 1.6-1.9) were most strongly and consistently associated with poor prognosis. Other factors widely believed to be of prognostic importance, including sex and age at onset, demonstrated inconsistent or weak effects on prognosis.
Conclusions The most robust predictors of long-term physical disability in relapsing-remitting multiple sclerosis are sphincter symptoms at onset and early disease course outcomes. These factors can be used to guide treatment decisions for drugs with significant toxicities.

Author Affiliations: Department of Health Research and Policy, Stanford University School of Medicine (Drs Langer-Gould, Popat, Cobb, Gould, and Nelson and Ms Huang), and Department of Neurology, Stanford University (Dr Langer-Gould), Stanford, Calif; Department of Immunology, Faculty of Medical Sciences, New University of Lisbon, Lisbon, Portugal (Dr Fontoura); and VA Palo Alto Health Care System, Palo Alto, Calif (Dr Gould). Ms Huang is now with Touro University College of Osteopathic Medicine, Vallejo, Calif.

agate wrote:I got a wheelchair 4 years after diagnosis, but at that point Type 2 diabetes had entered the picture for me as well. I still have the wheelchair, still sit in it most of the time, but I also can walk--a mile on good days.

Agate,

That gives me hope. There are times I think I need the wheelchair, but often I can walk a long distance without major problems. If I get one someday, I hope I'll be like you and continuing to walk as long as possible.

P.S.

I don't think they can reliably predict it either. There are too many variables in individual patients.