#ClinicSpeak: a low EDSS hides a lot

Don’t be lulled into a false sense of security with a low EDSS. #ClinicSpeak #MSBlog

Every now and then you get a reminder of how debilitating MS can be and how crude, or crap, the EDSS really is in capturing the impact of MS.  

The study below analysed gait in adolescents with MS (~15 years of age) with average disease duration of less than 2 years, in other words early MS, and a low EDSS 1.7 (no discernible or outwardly visible disability). The remarkable finding in this study is that despite low disability as measured by the EDSS the results show that adolescents MSers walked slower with a wider base of support compared with age-matched healthy control subjects. You may say big deal these changes are too subtle to matter, but scale this up to other neuronal systems including cognition and you can imagine the impact, or potential impact, this would have on these MSers functioning. Adolescents are at a stage in their lives were they need to function at school and on the sports field. Being able to compete and fitting in is important for their development. These adolescent MSers are unlikely to be excel on the sports field, which is brutal when it comes to natural selection. Hopefully, the classroom will allow them some comfort. 

All this makes me realise that we are disadvantaging so many young people with this disease. The possibility that MS may be preventable makes me angry. Why haven’t we started prevention studies? Why does science take so long to get going and achieve things? 

If I was a parent with a child with MS I would find this piece of research frightening. All I can say to reassure you is that with the emergence of highly effective treatments and a change in our treatment paradigm to treat-2-target of NEDA we will hopefully save your children from the full brunt of the disease. 

Kalron et al. Gait Characteristics in Adolescents With Multiple Sclerosis. Pediatr Neurol. 2016 Dec 22. pii: S0887-8994(16)30723-8.

BACKGROUND: Multiple sclerosis is a progressive autoimmune disease of the central nervous system. A presentation of multiple sclerosis before age 18 years has traditionally been thought to be rare. However, during the past decade, more cases have been reported.

PATIENT DESCRIPTION: We examined gait characteristics in 24 adolescents with multiple sclerosis (12 girls, 12 boys). Mean disease duration was 20.4 (S.D. = 24.9) months and mean age was 15.5 (S.D. = 1.1) years. The mean expanded disability status scale score was 1.7 (S.D. = 0.7) indicating minimal disability. Outcomes were compared with gait and the gait variability index value of healthy age-matched adolescents.

RESULTS: Adolescents with multiple sclerosis walked slower with a wider base of support compared with age-matched healthy control subjects. Moreover, the gait variability index was lower in the multiple sclerosis group compared with the values in the healthy adolescents: 85.4 (S.D. = 8.1) vs 96.5 (S.D. = 7.4).

CONCLUSIONS: We present gait parameters of adolescents with multiple sclerosis. From a clinical standpoint, our data could improve management of walking dysfunction in this relatively young population.

35 thoughts on “#ClinicSpeak: a low EDSS hides a lot”

  1. It is indeed frightening. I have ms, my 15 year old daughter is off school again today with dizziness and lethargy, it is always worse when she has a virus, though she only has a mild sore throat. Paediatrition can't get to bottom of it and school are getting stroppy, it has been going on for 2 years. Other symptoms are also of concern. Hard not to jump to the wrong conclusions. On the one hand I wish he would carry out an MRI, on the other I don't want to alarm my daughter. I imagine it would be too soon for anything to show up anyway. We really need some markers to look for in young people.

    1. Get an MRI, go there refuse to leave without an MRI prescription. Call your local fancy private hospital, negotiate a price for an MRI. Whatever it takes.

    2. In the Pediatric MS Alliance, we do have a few families with parent and child having MS. As well as a few with 2 children with MS or one with MS and another with autoimmune/inflammatory disease.It is quite difficult to get children diagnosed with MS, as it feels that the majority of the neurologic and pediatric doctors still live in the "MS happens at 20-50 years old" mantra.Tell that to all the 2-18 year olds we have.Our daughter displayed first sign perhaps at 3…was not diagnosed until 18.

  2. Prof G if you don't trust the EDSS what would you recommend to monitor the disease early in its course?

    1. Re: "…what would you recommend to monitor the disease early in its course?"MRI is the most accepted biomarker; mainly new lesions and enhancing or active lesions. We are beginning to use CSF as well; this can let us know if there is inflammation and or ongoing damage. I also think in future we will be monitoring cognition, anxiety, depression, fatigue, activity, etc. using PROMS and devices. What is clear is the EDSS is too insensitive at low scores to detect change.

    1. Re: "Why the web-EDSS?"We did this to give pwMS access to an estimate of their own EDSS score. This would then allow them to interpret literature about prognosis based on the EDSS. We never expected the web-EDSS to be good enough as a PROM. However, it has turned out to be a very good surrogate for the physician measured EDSS and therefore can act as a bridge for new outcome studies. The webEDSS is very empowering for pwMS; it allows you to be come semi-independent of your neurologist. In other words you don't have to rely on your neurologist to examine you and give you a score, you can do it yourself. You can therefore assess whether or not you are eligible for clinical trials, test your eligibility for DMTs, and you can even design and run your own studies. I could go on. Please note the web-EDSS is still in development. We plan to embed a whole raft of devices so that you can assess your own neurological function. I anticipate the web-EDSS being better and more reliable than the physician EDSS.

  3. Totally agree… EDSS misses most of the clinical mantifestations until it is too late. Why don't you then develop a tool (using the same platform as EDSS online scoring) giving a score of other parameters (cognition, fatigue, depression, anxiety, social withdrawal, activity ( or lack thereof), motivation( or lack thereof), energy levels, sleep etc.:-). I think it could be a useful tool. It is the things life itself is made of.

  4. Am edss 0, on natalizumab I know nothing is certain, live life every day, am not going to worry about this. I don't have a crystal ball I believe that I am at a higher risk of being hit by the proverbial bus. I choose not to worry about what is outside my control, there is nothing I can do. Get the girls fed, watered and out the door to school, get this f-ing project somehow delivered at work.

  5. Re: "All I can say to reassure you is that with the emergence of highly effective treatments and a change in our treatment paradigm to treat-2-target of NEDA we will hopefully save your children from the full brunt of the disease."Oh really, Don Giovannoni? So you're saying these toxic drugs you've steered, via committees that have paid for your services, will cure adolescent MS? Will they never become physically disabled or cognitively impaired in their futures'? You can assure us of that, right?What irresponsible statements, Don Giovannoni. You yourself conceded that to combat MS efficaciously, CD19 rather than CD20 monoclonal treatments are needed, and even then you're not sure. Are you for real, bruv?Don Giovannoni visualises an overmedicated Britannia, one where sufferers are human lab rats.You're fishin' in the dark, son.Also, why are the bleeding blog posts getting so long again? Too many frigging posts every day, too. Restraint, Don Giovannoni.

    1. Dre is right. The bog posts are getting too needlessly long and there are too many posts every day. Don Giovannoni said he'd stop that.

    2. Team G endeavours to answer reasonable questions from anyone that asks them. Really love that ;-)Dre's offerings tend to be the nihilistic diatribe rather than substantive enquiry.

    3. As a paid up member of the Dre fanclub I think you need to get you facts straight. There are many people who question us, those who do it more frequently get noticed. Can we remember VV, at least vv used to take us on,based on scientific grounds. Dre on the other hand, fails to deliver the charismatic rants interlaced with the bonkers on which he gained his notoriety, and has become abit of a one trick pony on these toxic drugs of late. What's your answer? Do it nothing?As to long posts. Dammed if you do dammed if you don't as sometimes if you don't understand the background how will you get the issues.Short posts dammed if you do dammed if you don't. Is it better to have an engergized profG posting more than he said he would do or maybe go back to one post a month.Maybe Dre likes this information in sound bites,

    4. ProfG's posts are my favorite. His writing is very clear and concise, that is probably how he thinks also. It's easy for MSers like me, who have issues with cognition, to understand and follow the entire article.

    5. Honestly, I don't know why comments which are just rants based on no scientific evidence are allowed and not filtered out. I don't mind the long posts at all, actually I prefer them since they explain many details and present the background of a study. Whoever doesn't want to read them can skim them.

    6. "ProfG's posts are my favorite"Thanks for the thumbs up:-(Suppose I always knew I am a space filler

    7. Dear DreGiven that you seem to be virulently anti Pharma, what is your recommendation for MS? Cross your fingers and hope it goes away?

    8. The Jewish Rabbi, Rashi, said: “Receive with simplicity everything that happens to you. To absorb God’s body blows is to be fully alive."You need to be more Jewish in your outlook on life, MD2, as do your readers suffering from MS. You guys are lacking in spiritual elation, and seriously depressed because of it. Have you ever considered a reversion to the Jewish faith? It may do wonders for you.My Buddhist brothers have an interesting approach too. They claim that as humans we are born to suffer. We don't just suffer illnesses, we suffer from desire; desire for material stuff and coveting. But we can eliminate suffering by just not needing. We need to accept out lot in life and then we will be happy. If you're suffering illness then you, the sufferer, has total control, not you neurologist. You can say that you'll survive the journey of MS with a smile and not cry about it because it's not worth one of your tears, no matter how bad it gets. You have the power.Take control today. Don't let them poison you with toxic drugs made by a faceless pharmaceutical company that sees your illness as an opportunity to make money for itself.

    9. Seems like your recommending pwMS let their MS take control and meekly accept that. With respect, I don't agree.

  6. I don't understand what his problem with long/short posts is..who cares. If you don't like them, stop reading them..some of us like the detail and thinking aloud expressed by experts..w.r.t. ms where else can you get that on the internet?

  7. Sometimes I look at local news and the world outside and wonder: why do we humans remain so selfish and greedy? I say this because if there is, for example, a possibility of preventing MS or any other disease, that responsibility belongs to everyone, efforts should come from the countries as a whole in unity. But then I remember the talk of "national sovereignty", and how each country closes in public health policies often unsuccessful. If there is the possibility that MS is caused by certain environmental factors such as viral infections (such as EBV) and low vitamin D levels, interacting with certain genetic factors, why not speed up the research to try to identify even the causalities and how Prevent disease in the future? It's a huge frustration. And I like the long, dense posts, at least my brain works to try to understand them…

    1. EBV has been implicated in other diseases, not just the speculation it has something to do with MS. And still the world has done little to try to eradicate it… because relatively few people develop the 'complications'. when you think about how many "travesties" there are world wide, it is hard for people to care equally about all of them. it is easier to go on about one's life, participating in the very 'societal' 'bureaucratic' ways that we complain about when they burn us. you and i are lawyers (i think). from 9 to 5 (aka from 7:30am to 7pm) most days, i turn off my leftist ways and go to my 12th floor office with great views of the world and work to make my bosses rich, often at the expense of the clients' finances and lives, and all very ethically and according to the rules set for me by the government and the law society. sometimes, when i come across someone trully needing help i will stay behind until 9pm or 10pm to do something for them – because by that time i've made enough money for my bosses and they won't notice a freebie here and there. often i don't, often i go home at 6 or 7 to my partner with ms, because she is more important to me then others needing help they can't afford…

    2. Anon 10:19Great comment. You're right about EBV, not much profit in vaccines full stop. I really wish there was one then we could finally work out if it really is at the root of MS, though it would take decades to find that out.

  8. Word from the wise, you have Dr Dre posting statements on toxic drugs. This is a medical blog, he is claiming to be a Doctor, he cannot post whilst claiming to be a doctor. I think his posts are idiotic but whatever your blog not mine, however he cannot claim to be a doctor and post that our drugs are toxic.

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