MS News That Caught My Eye Last Week: ODRS Test, Kesimpta, Coping Strategies, Dual Tasking
Columnist Ed Tobias comments on the week's top MS news
Study Supports MS Disability Test Score as Outcome Measure in Trials
Adding two other disability measurements to the commonly used Expanded Disability Status Scale (EDSS) is a good idea, not only for trials but also in everyday patient assessments as well. Measuring our level of disability using only the EDSS, which is mainly based on maximum walking distance without assistance, fails to take into account the impact that weakened upper-body strength and cognitive problems have on the quality of life for people with MS. Using the more complete Overall Disability Response Score (ODRS) to judge outcomes in clinical trials is a step in the right direction.
The Overall Disability Response Score, a combination of three different assessments of disability, could be used to more accurately evaluate the effectiveness of treatments in multiple sclerosis (MS) clinical trials, a new study illustrates.
The score is composed of three measures commonly used to assess disability in MS, which evaluate hand dexterity, walking ability, and overall disability.
Kesimpta More Effective, Costs Less Than Most DMTs for RRMS: Analysis
I have no evidence this study is anything less than straight-up, but I always have to think twice when I read of a study that reports a DMT is better and less expensive than others. And then I see that the study was paid for by the manufacturer of that DMT. Am I wrong to be suspicious?
Kesimpta (ofatumumab) is more cost-effective for treating relapsing-remitting multiple sclerosis (RRMS) than most other disease-modifying therapies (DMTs) approved in Canada, according to a new analysis.
The analysis indicated that Kesimpta is generally more effective and associated with fewer costs than the majority of MS treatments, with the exception of glatiramer acetate. However, while glatiramer acetate — sold as Copaxone, with generics also available — did have fewer costs, it was less effective.
Unhealthy Coping Strategies in MS May Lead to Worse Quality of Life
As I surf across multiple sclerosis social sites, I regularly read of people, particularly those newly diagnosed, who cope with MS by avoiding or denying it. My coping strategy has always been to accept that I have MS and try to do as much as I can, in terms of medication and exercise, to live with it. What’s your coping strategy?
People with multiple sclerosis (MS) may be more likely to use unhealthy or ineffective coping mechanisms than healthy individuals — and these “maladaptive strategies” are linked to worse mood and a poorer quality of life among patients, according to a new review study.
Rather than also relying on active coping strategies, like seeking social support or creating positive meaning, patients tended to use only more passive strategies, like denial or simply not dealing with stressful situations and emotions. Such avoidance, however, is associated with increased depression, anxiety, fatigue, and a worse quality of life in MS patients.
Dual Cognitive, Motor Tasks More Difficult Even in Early MS Stages
It’s not quite like walking and chewing gum at the same time, but it doesn’t seem far off. In this study, subjects were asked to stand still with their eyes closed, or walk a short distance, while trying to complete a cognitive test at the same time. This dual tasking appeared more difficult for people with MS than for healthy folks. It’s hoped this knowledge will lead to interventions that can correct this deficit.
Even in early stages of disease, people with multiple sclerosis (MS) commonly experience more difficulties performing cognitive and motor tasks simultaneously than do people without MS, a new study indicates.
The study, “Cognitive-motor interference in people with mild to moderate multiple sclerosis, in comparison with healthy controls,” was published in Multiple Sclerosis and Related Disorders.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Daniel Tibbetts
I am coping with MS and I find that I truly hate having MS. Industrial concentrated pure hate that goes strait to hell. I so hate how I am now. By accepting the burning embers of hate seems to give me a reason to keep on doing something about MS and that is to Hate it . I do, I do hate it. I do not plan to do anything other than hate to cure my MS. Peace and calm be with you, Danny
Erika "Ricki" Becker
You're expending way too much energy on hating it as opposed to just living with it!! Take a walk, look around, use an e watch or other pedometer (sp) and build up your walking. Please stop feeling sorry for yourself! You have a lot of living to do!
Ed Tobias
Hey Danny,
Really? That's it? Just hate? Nothing wrong with hating it but what do you think about doing something else, just for a little variety? I like to say I live with my MS, I don't fight it. Kinda hard to fight, or hate, someone all the time that I live with.
Ed
Tom Anderson
Hello Ed- Regarding coping strategies, I too find the denial aspects found sometimes in social media sites interesting. It’s interesting to me, in part, because psychology was my “bread and butter” prior to disability-retirement, AND, I see this ability- to “re-brand“ unfavorable information into something else, being used widely in other domains such as politics. So it all fascinates me. I’ve never been very good at that, “re-branding truth” and instead, seek the truth by looking for “answers” amongst the overwhelming data. But it wasn’t always that way….
In addition, I also think about the fairness of it all (then vs. now). In a sense, I was lucky because I started Betaseron back in 1994, and because that was the only “choice”, life with MS was easier (I believe). I learned it all (I thought). Avoided “bee stings”, went on Swank diet, had my numerous amalgam fillings removed, and did strong steroids within 3 days of any “attack” or what appeared as what my Dr. and I thought maybe was an attack (did that perhaps 8-10 times total). My progression and symptoms via lived experience improved; my MRIs were all good(till today, still), so I stopped delving deep into MS knowledge for 20 years (although injections every two days kept me from totally forgetting I had MS). I thought I had the problem licked.
Then leg pain forced me to look into and change things, covid came, and I had to become “expert” again to guide my way. B cells, T cells, smoldering, effective vs. non effective DMTs…. it can be overwhelming, and I’m not a “dumb guy”. There was no substantial internet before in 1995. Now knowledge or stuff pretending to be, is all over the place and amongst this, people get to say and make up and believe anything they want. So being newly diagnosed today is a much more complicated situation. It is much easier to be convinced of your own “re-branding of truth” when others are doing the same thing. Reading some of the personal stories is very sad, when someone “wakes up”, usually blaming it on someone or something else. Look, we all got screwed with MS and really there is only two ways to head- actively do some proven and/or actively being studied or scientifically being considered, or go into a whole. Never forget time is always of the essence so don’t delay. You can’t go back.
I enjoyed reading the story of the Elton John concert you went to. I’m glad you really enjoyed it. Sorry to be so negative here.
Ed Tobias
Hey Tom,
I don't think what you're saying is negative...it's the truth. No re-branding for you and that's a good thing. Wouldn't the world be better off if re-branding suddenly disappeared from our lives.
I, too, started on a DMT around 1995. In fact, I was in the Phase III trial of Avonex. Did steroids, off and on, for 15 years before that. But, no bee stings, filling removals or diet changes. I mean, a guy can only go so far!
It's always good to hear from you and I enjoy knowing that you enjoy the stuff I write.
Ed
Arloa Raffler
Love your comments. I have MS as my mother did. I never realized until your letter why my mother had IV's in the hospital every now and then. I was not very old. Thank you for your information and try to enjoy life as best you can. This is a short life we live, compared to our vast universe.