Disability begets disability. There is no escaping the EDSS. #MSBlog #MSResearch
“Despite having a downer on the EDSS it remains the flawed gold standard for measuring the impact of MS on groups and individuals with MS. The message from this study below is that disability begets disability. Therefore if you have any evidence of disability, even if its hidden you are more likely to become disabled in the future. There is one proviso; this statement may not apply if you are on effective DMTs as the evidence suggests if you are a responder to first-line treatments or on highly-effective treatments you do better; the disability curve flat-lines or the slope is changed.”
“Are there other things that can be done to slow down disability progression? Yes, there are lifestyle things that can be done. Improved diet, exercise and stopping smoking if you smoke. All the things that have been shown to reduce your cardiovascular risk will also work in MS. Why? MS reduces your brain reserve therefore any other insult will result in additional hits to your functioning. We need to stop MSers getting other diseases, including lifestyle diseases.”
“Why doesn’t DMTs work in SPMS and PPMS then? We don’t know if they don’t. Inflammatory activity in the brain and spinal cord today plays out with regard to progression 2-3 years from now. Therefore progression today was started or primed several years ago. All the trials to date in progressive MS have been too short. The other is the level of expectation; if I go onto these treatments today then my progression should stop. It should be more liker if I go onto these treatments today I my progression will continue and will hopefully slow down or stop in several years time. We are all guilty of setting unrealistic goals for SPMS and PPMS treatments. It is time to recalibrate expectations and be realistic. I will do a detailed post on mechanisms of progressive MS to explain the science about my position.”
“It is also becoming clearer to me that I need to get our web EDSS calculator up and running ASAP. If you can’t track your own disability progression how are you going to be able to monitor the impact of these various interventions on your disease course?”
Chruzander et al. A 10-year follow-up of a population-based study of people with multiple sclerosis in Stockholm, Sweden: Changes in disability and the value of different factors in predicting disability and mortality.J Neurol Sci. 2013 Jul 26.
BACKGROUND: MSers experience progressively worsening disability over a period of decades, thus further knowledge about the long-term changes in different areas of disability is essential.
OBJECTIVES: The aims of this study were to evaluate changes in disability over ten years in MSers, and to explore the value of personal and disease-specific factors and depressive symptoms in predicting disability. A further aim was to explore the value of these factors as predictors of mortality.
METHODS: This study was based on a 10-year follow-up of a population-based study in Stockholm (n=166). Home visits were used to collect data on personal and disease-specific factors, walking ability, manual dexterity, cognitive function, mood, activities of daily living (ADL) and social/lifestyle activities.
RESULTS: The proportion of the study population who had disability in cognition, mood and social/lifestyle activities remained stable, while the proportion with disability in walking, manual dexterity and ADL increased. Disease severity predicted an increase in all studied variables of disability except in depressive symptoms. Older age and depressive symptoms were associated with mortality.
CONCLUSION: This study illustrates the importance of tailored interventions for MSers and highlights the need for health-care professionals to consider the psychological aspects of the disease. Furthermore, our results indicate that the Expanded Disability Status Scale was a useful tool for predicting future disability.
So are you saying that Progressive MSers taking DMTs today *could* be slowing progression a few, or several, years hence?
Yep:http://www.ncbi.nlm.nih.gov/pubmed/22084124
Man, that kind of breaks my heart. Before I was ever diagnosed, I lost a friend to MS. She was PPMS. Her husband told me later that she was on the Copaxone trial for PPMS and thought it was doing something for her. The trial was deemed a failure, and they took the drug away from her. He said she lost hope at that point. I guess I always thought she was just experiencing placebo effect with Copaxone, but maybe not.
Has anyone done any research to prove that improved diet, exercise and not smoking improves long term prognosis prospects?
We know that smokers do worse therefore the corollary is therefore that if you stop smoking you will do better. Similarly if you have or develop comorbidities, i.e. other diseases that affect the brain you do worse. Therefore preventing or treating these will improve your outcome; these are common lifestyle-related diseases such as hypertension, diabetes, stroke, etc. The data on exercise is more complex, but it can be linked directly to a better outcome. Exercise also increases your brain reserve this why is is a no-brainer to encourage.
What type of exercise is recommended according to studies? Weight training or aerobics? Personally I have found when I do aerobics especially running (don't know if its psychological or real) I seem to have better control over my right leg which otherwise is a little harder to lift, on the downside I suffer from extreme fatigue the rest of the day of the workout, but i notice the leg seems more responsive the next few days.
Prof G I have no doubt in my mind that diet, exercise and not smoking works for me, but I wanted to know if any research has been done to prove it. Do the drug trials consider these factors when choosing patient?
read through the blog to get examples of evidence.I don't think this information is collected, maybe be smoking. Prog G willknow
I was at an Acthar sponsored event last month, and presenter said aerobic exercise has more impact slowing MS, but any exercise is better than no exercise. I understand why he said the first part, and the second is something I've always taken to be true for exercise and diet. The "best one" is the plan you are going to continue. It's the lifestyle change which has the biggest impact.I am with the above poster on running. Running does more for my spasticity than any of the other exercises I do. Rowing on the rowing machine is a close second. Weight training and yoga help, but not in the same way. I also wonder if some of the benefits of exercise come from feeling better about myself. I feel less like the hairy slug when I've just run a couple of miles. I know depression is both a symptom and a likely cause/harbinger of future progression.
All of these things help MS because they improve blood flow through the brain.The vascular connection is being ignored right under our noses.A double bluff that is working extremely well.How sad.
Is that the vascular supply that is under your nose Andy?The vascular "connection" has been extensively investigated subsequent to Zamboni's initial report and has been found wanting. A lot of money has been wasted that could have been better spent elsewhere.
You will find a good deal of references here: http://www.overcomingmultiplesclerosis.org
I second you anon 9:24