Multiple Sclerosis

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  • Recent Research on HSCT, the Stem Cell Therapy That May Soon Change the MS Treatment Landscape.

    Wheelchair Kamikaze
    The Wheelchair Kamikaze
    4 Jun 2015 | 9:22 pm
    (Please note: the following article is quite long. Though it covers a very important topic and I’ve tried to make it as accessible as possible, I’d suggest getting comfy and grabbing a nice beverage before diving in…) Over the last six months or so, there has been a wave of new and encouraging research published regarding HSCT (Hematopoietic Stem Cell Therapy) for the treatment of multiple sclerosis. HSCT is the type of stem cell therapy in which a patient’s existing immune system is completely eradicated through the use of powerful chemotherapy drugs and is then rebooted via an…
  • Training on a treadmill helps improve walking

    Multiple Sclerosis Research
    MouseDoctor
    2 Jul 2015 | 11:00 pm
    Braendvik SM, Koret T, Helbostad JL, Lorås H, Bråthen G, Hovdal HO, Aamot IL. Treadmill Training or Progressive Strength Training to Improve Walking in People with Multiple Sclerosis? A Randomized Parallel Group Trial. Physiother Res Int. 2015 Jun 25. doi: 10.1002/pri.1636. [Epub ahead of print]BACKGROUND AND PURPOSE:The most effective treatment approach to improve walking in people with multiple sclerosis (MS) is not known. The aim of this trial was to assess the efficacy of treadmill training and progressive strength training on walking in people with MS.METHODS:A single blinded…
  • ClinicSpeak: efficacy of fingolimod

    Multiple Sclerosis Research
    Gavin Giovannoni
    2 Jul 2015 | 10:54 pm
    Fingolimod works in highly-active MS. #ClinicSpeak #MSResearch #MSBlog"Post-hoc subgroup analyses are all the vogue and allow one to decide whether or not a particular population of MSers is more or less responsive to a therapy. A particularly important  group are MSers with so called highly-active MS based on disease activity in the last 12 months and baseline features on MRI."DEFINITION OF HIGHLY ACTIVE MS:  1) ≥ 1 relapse in the previous year and either ≥ 1 gadolinium (Gd)-enhancing T1 lesion or ≥ 9 T2 lesions at baseline  and/or 2) as many or more relapses in the year…
  • Discovery of a treatment to block the progression of multiple sclerosis

    Multiple Sclerosis Research News -- ScienceDaily
    20 May 2015 | 5:26 am
    A drug that could halt the progression of multiple sclerosis may soon be developed thanks to a new discovery.
  • frustrated after visit to neuros - I'm newbie

    ThisIsMS - News
    vilnietis
    3 Jul 2015 | 5:01 am
    Introductions Statistics : 3 Replies || 79 Views Post by vilnietis
 
 
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    MS-UK Latest MS News

  • American Society funds grant to explore new MS pathology model

    2 Jul 2015 | 11:32 am
    America’s National Multiple Sclerosis Society has provided a grant to a Wayne State University School of Medicine professor to explore a new model of MS pathology.....
  • Studies provide positive results for new MS drug

    30 Jun 2015 | 6:54 am
    Genentech has announced positive results from two studies evaluating ocrelizumab for people with relapsing multiple sclerosis (MS).The studies (called OPERA I and OPERA II) met their primary and major secondary endpoints...
  • Gilenya ‘found to have long-term positive effects’

    30 Jun 2015 | 5:41 am
    A new study published in the Journal of Neurology, Neurosurgery and Psychiatry has found long-term Gilenya therapy can maintain a low disease activity in patients with relapsing-remitting multiple sclerosis (RRMS). The study, Long-Term (up to 4.5 years) Treatment With Fingolimod (Gilenya) In Multiple Sclerosis: Results From The Extension Of The Randomised TRANSFORMS Study, was conducted by an international team of researchers.....
  • New MS guidelines released

    26 Jun 2015 | 5:27 am
    The Association of British Neurologists (ABN) has published new guidelines for how Disease Modifying Therapies (DMTs) for relapsing remitting multiple sclerosis should be monitored and prescribed in the UK, emphasising the “right treatment at the right time..............
  • Medical marijuana evidence is ‘moderate quality’

    25 Jun 2015 | 11:58 am
    Medical marijuana may be useful in treating chronic pain and spasticity but less effective for other conditions, according to the results of a review published in the Journal of the American Medical Association....
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    multiple sclerosis

  • UPDATED: Roche heralds PhIII successes for MS, but some tough rivals lie in wait

    John Carroll
    30 Jun 2015 | 5:03 am
    Roche heralded the late-stage success of two big trials for its multiple sclerosis drug ocrelizumab today, which they say puts them on a straight road to regulatory filings for the injectable in early 2016. But even under the best-case scenario for the future, the Big Pharma player will face a tough task squaring off against the new oral drugs that have been divvying up this big market recently.
  • Ablynx adds Genzyme to roster of big-name collaborators

    Nick Paul Taylor
    21 May 2015 | 12:51 am
    Ablynx has entered into a collaboration with Sanofi's Genzyme to investigate the use of its single-domain antibodies against a target involved with multiple sclerosis. The deal gives Genzyme the exclusive right to test the antibodies in models relevant to multiple sclerosis.
  • Biogen's novel MS drug shows promise of repairing nerve tissue

    Damian Garde
    15 Apr 2015 | 8:50 am
    Biogen's latest treatment for multiple sclerosis helped repair damaged nerve tissue in a Phase II study, an incremental victory for a novel therapy that has a long way to go.
  • Biogen's future: Bigger bets on CNS, smaller name

    Damian Garde
    23 Mar 2015 | 6:43 am
    Biogen's latest evolution is more than just a nominal shift, according to its CEO, as the Big Biotech lops the Idec from its name and hopes to parlay its success in multiple sclerosis into some tough-to-treat diseases.
  • Google, Biogen team up on MS research: report

    John Carroll
    27 Jan 2015 | 7:42 am
    Looking for some insights into the way that environment and biology influence the development of multiple sclerosis, Biogen Idec will team up with Google to sift through a mountain of data on the topic, according to a report from Bloomberg.
 
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    Life With Multiple Sclerosis

  • Speed Bumps Along the Multiple Sclerosis Road

    Trevis Gleason
    30 Jun 2015 | 11:42 am
    Living with multiple sclerosis and attempting to look ahead in life can sometimes feel like staring at an unfamiliar, winding road, mostly obscured by a foul mist of dragon’s breath. Often, therefore, we choose to look into the rearview mirror instead to try to gauge our life with MS thus far. At diagnosis, we try to pinpoint the onset of our symptoms. When we visit our doctors for annual exams, we try to recollect the previous year’s events. Even here in the Life With Multiple Sclerosis column, we check in monthly with our How’s Your MS Today? post to see how we all are relative to the…
  • MS and Heat Sensitivity: I Thought I Knew What to Do

    Trevis Gleason
    26 Jun 2015 | 9:14 am
    It’s always nice to come home after being away for a few weeks.  It was particularly pleasant to return home to an 85°F temperature change. On a recent leg of my book release tour, the hottest day while I was in South Carolina was 103°F  with humidity closer than a hoarder’s cupboard. By the end of nearly two weeks in the South, my multiple sclerosis and I now fully understand what heat can do to us. I’ve gone on about MS and heat sensitivity and thought that I had a good plan. My plan went out the window when air-conditioning in a car in which I was riding couldn’t keep up…
  • Appointment Amnesia: Why You Forget Everything Your Doctor Says

    Trevis Gleason
    16 Jun 2015 | 12:09 pm
    In a continuation of the ongoing posts we call the MS Symptom Thesaurus, which we first stumbled upon tongue in cheek, I thought we’d address something that isn’t exclusive to multiple sclerosis. Generally, this “symptom” gets better as we progress from that diagnosing appointment. The problem is that as MS progresses, our cognitive function can be impaired. Thus, as we are more comfortable and can remember more, we might not remember as much. Weird! So, today I’d like us to talk about MS Appointment Amnesia. I’ve heard it said that the average person remembers about 60…
  • How’s Your MS Today? I’m Beating the Heat in Florida

    Trevis Gleason
    11 Jun 2015 | 12:59 pm
    Time for that monthly check-in: How’s your MS today? Me, I landed in the Tampa Bay area of Florida this week, and WOW! I had forgotten what heat and humidity can do to a body. We’ve talked about what heat can do to people with MS before. I’ve also written about coping options to keep cool. Well, this next couple of weeks in America’s southeast corner is going to see me using every option available. I even prepared for what I suspected the trip would do to me by arranging my first airport wheelchair ride from gate to baggage claim. It’s all about planning ahead. What’s that old…
  • Unsolicited MS Advice? Thanks, But No Thanks

    Trevis Gleason
    9 Jun 2015 | 2:00 pm
    As a consultant in the food world I always adhered to the adage, “Free advice is taken at face value.” That is to say that people respect and respond to an “opinion” much more when they’re paying top dollar (or Euro) for the advice. Those of us living with a chronic illness need to consider the source of well-intended advice, as well. In recent days I’ve been traveling around New England in support of my book, Chef Interrupted. Though I traveled the area extensively when I lived here, it’s been <cough> more than 20 years … some things have changed. On a…
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    Brass and Ivory: Life with MS and RA

  • Just Got Pregnant and Take MS Drugs? Here’s What You Should Do

    23 Jun 2015 | 2:37 pm
    Learning that you are pregnant can be an exciting event. But unexpectedly becoming pregnant while you are taking powerful medications can cause panic and concern. For many medications, research studies have not been thoroughly conducted to ascertain the safety of specific medication use before or during pregnancy.What to do once you learn you are pregnantContact your doctor. The best person equipped to work with you in deciding what you need to do to ensure the safety of your unborn child is your healthcare provider. If you have MS, contact your neurologist. If you have RA, contact your…
  • Thank You For Reading! 1,000,000 and counting

    19 Jun 2015 | 8:11 am
    When I started this blog in 2007, I had no idea where it would take me...literally across the globe.I've met an amazing group of individuals who live with strength, beauty, and grace in the face of adversity. I've met professionals who are passionate about their work and want to improve the lives of people living with chronic disease.The MS and RA communities are full of people who lift each other up and I'm pleased to be able to contribute to our collective body of support and knowledge.Thank you for making me, and my blog, part of your journey as a patient, caregiver, loved one, or…
  • Self-Pay Discount Offered by Hospital Patient Billing Department

    17 Jun 2015 | 6:55 am
    A recent experience with the local hospital following a round of Rituxan treatment demonstrated that the local hospital has put in place patient-friendly policies.During the conversation with patient billing, I learned that the $9,186 charge for a single Rituxan infusion had been reduced since the system had incorrectly designated my account as self-pay. The discount was a whooping 50 percent!!If I were a patient who truly did not have health insurance, this would be great. To get a discount without having to ask or negotiate for it. How amazing is that?!I’m glad that I do have insurance…
  • Gadolinium Can Cause Troublesome Side-Effects

    15 Jun 2015 | 6:48 am
    Reported by ProPublica, patients who have undergone MRI with contrast have been experiencing concerning side-effects, such as cognitive effects. It is known that patients with impaired kidney function who are unable to excrete gadolinium should avoid contrast agents. However, three recent studies reveal that even patients with healthy kidneys are retaining traces of gadolinium, a potentially toxic metal, in different parts of the body.Of the nine gadolinium-based contrast agents sold in the US, Omniscan and Magnevist are the ones causing problems. Radiologists are encouraged to change their…
  • What Do You Do When Your Doctor Retires?

    10 Jun 2015 | 10:34 am
    I’ve been transferred from older retiring doctors to young doctors so many times. After I moved to the DC area, I needed a new eye doctor and asked for a recommendation from my longtime doctor in Oklahoma who had known me for almost 30 years. He recommended a former classmate who had a great reputation. After a few years, and my first bout of optic neuritis, this optometrist welcomed a younger doctor to the practice to whom he eventually sold the practice. The transition went smoothly enough but every once in a while I contemplate how I have more years under my belt as an eye patient (since…
 
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    A Short in the Cord

  • Hotel Art Tourist

    1 Jul 2015 | 7:30 pm
    Most people don't notice the artwork on hotel walls.  I do.   I used to enjoy traveling, but now find it to be physically and mentally challenging, which means that just getting to a hotel room is all the excitement I can take.  I recently went to the Renaissance Chicago Downtown Hotel for the MS Bloggers Forum, sponsored by Novartis (they provided airfare, travel, hotel, and meals).  While there, a number of participants explored Chicago, wandered along the river, visited the Navy Pier and the Millennium Park.  I, on the other hand, was just too spent from…
  • Insecurities: Arise!

    26 Jun 2015 | 7:27 am
    There is nothing like being with some of the best MS bloggers and writers in the US to stir up my insecurities.  So when I'm insecure, I blog.In a few hours, I'm heading to the Philly airport to go to Chicago for an all-expenses paid, Novartis-sponsored MS Bloggers Forum where I'll have a chance to schmooze with some of my favorite MS writers and activists. This is the second time I've been invited, and I'm honored to be asked to come back.  I don't know the complete line-up of luminaries, but here are a few that I'm excited to meet or to see again.While I'm waiting for the car to…
  • The Origins of "The Flickering Lamp"

    15 Jun 2015 | 7:37 pm
    Until Sunday, I thought the most frightening thing in the world was to be the person who reads a children's story (for all ages) during our church services. This Sunday, though, I realized that the most frightening thing in the world was to be the person who reads a children's story (for all ages), but without the story.Obviously, I'm exaggerating about what frightens me (a little). But what made me nervous this Sunday was that I didn't plan to "read" a story to the children; instead, we had a "conversation" in front of the congregation (anyone remember Art Linkletter?).Our theme was Body and…
  • The Final Final Results from the MS Walks

    2 Jun 2015 | 2:21 pm
    UPDATED figures are in, and the Wheeler's Wobblers raised $11,270.72 between our two 2015 MS walks in Wilmington and Newark, Delaware. You did a great job again this year, and I want to say "Thank you for walking, donating, and cheering!"Because this is my last year as team captain, (feel free to volunteer if you want all the fame and glory), I thought I'd recap and give your our final results.  In the six years that the Wobblers participated in the Delaware MS Walks, we raised almost $55,000. We grew from 8 teammates to almost 50. We expanded to participating in two cities. We had…
  • We'll Pause Now for This Station Break

    15 May 2015 | 11:01 am
    2015 has been a whirlwind already.  As I noted in an earlier blog ("I Can Do This"), I over committed to activities and, believe it or not, I am STILL paying for it physically and mentally.  It was all good stuff, but even the little tasks that only take one or two hours a week or happen only once a month will add up to a demanding, energy-draining schedule. Just yesterday, I forgot my fundamental rule for personal energy management: "Do no more than one event a day."  I had blood drawn in the morning, then saw my PCP in the afternoon, then had to spend time at the…
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    Navigating the Journey of MS

  • Caregiver

    28 Jun 2015 | 5:51 am
    Yesterday I hired a part time caregiverShe lives only a minute awayAnd has experience not only with lifting me butmSHopefully healing from this injury will be quickerI start physical therapy next week
  • Vet visit

    27 Jun 2015 | 6:50 am
    Yesterday we had to take my little dog to vet for his annual shots but because Of my X husbands threats to steal my dogs we always take both dogs to everyVisitThis time I was glad I had an appointment because the big dog had an accident Wednesday and was walking strangeThe big dog is 14 1/2 years old and has always had medical problemI jokingly asked vet one day if I could have a wing of their new facility in my nameRescue dogs always come with medical problemsAnyway noelle my big dog fell off the couch Wednesday The vet examed her and prescribed a pain killerAnd baby aspirinWe…
  • Day 2

    11 Jun 2015 | 7:05 am
    Last night was another MS nightmareMy body is hurting so badGoing to try and rest done todayHave sp much to do
  • Rough night

    10 Jun 2015 | 7:10 am
    Last night my body fell apartI got up to go the bathroom and couldn't get back in bedMy legs hurt so bad and it felt so warm upstairsUnable to get in bed I thought I'd go downstairs where it was coolerExcept my legs wouldn't cooperate and I couldn't get in chair liftBy this time almost 2 hours later I started to cryI knew I needed a pep talk so I called Mike in tearsHis reassuring voice and sitting in front of the fan gotMe motivated to try againMiraculously I was able to get on chair lift I took the dogs outAnd payed on couchI slept some but I feel awful right nowOut my positive face and…
  • A wonderful event

    9 Jun 2015 | 6:04 am
    I've been so busy I forgot about my blogThe funny thing is I'm writing again so I should have remembered my blogSo what's new??Over the weekend we went to hear my neuro speak and his special guest of David osmondWhat a great programMy neuro is a brilliant man and David was truly a beautiful personI was fortunate to mèet him and we enjoyed the program and the entire weekendIt was an early start Saturday morning so we stayed in Milwaukee Friday nightKeep smiling everybody
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    MS Trust Recent Story List

  • Oral v IV steroids for relapses

    29 Jun 2015 | 4:00 pm
    A new study at 13 centres in France has found no that there was no difference on outcomes whether someone took oral or intravenous steroids to treat relapses. UKMi Steroids - A to Z of MS
  • Ocrelizumab trial results

    29 Jun 2015 | 4:00 pm
    Two phase III studies of a potential new injected disease modifying drug for relapsing remitting MS show that it "significantly reduced" relapses, new lesions and the build up of disability compared to Rebif. The manufacturer plans to submit the drug for licensing next year. A phase III trial in primary progressive MS is due to report later this year. Reuters Roche press release Ocrelizumab - drugs in development
  • Fingolimod extension study

    28 Jun 2015 | 4:00 pm
    Results after four and half years show that people who started in the beta interferon arm had fewer relapses and less MRI activity after they had switched to fingolimod. MS News Today Disease modifying drugs for relapsing remitting MS
  • Journalist with MS

    24 Jun 2015 | 4:00 pm
    Christian Donlan writes about his diagnosis last year and how living with MS has changed his view of his body and his life. New Statesman Newly diagnosed with multiple sclerosis
  • Medical cannabis reviews

    22 Jun 2015 | 4:00 pm
    Two reviews of the use of cannabis for medical reasons have found only weak evidence for its use in most conditions. The exceptions were the treatment of muscle spasms in MS and of long lasting pain. Reuters Cannabis - A to Z of MS
 
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    Wheelchair Kamikaze

  • I’m Off to the National Institutes Of Health…

    The Wheelchair Kamikaze
    22 Jun 2015 | 9:23 pm
    Just wanted to check in lest anybody think I vaporized or otherwise met with misfortune. I’ll have to keep this relatively short, as I’m scrambling to get ready to go to the National Institutes of Health (NIH) Clinical Center, in Bethesda Maryland. The NIH is the US government’s primary medical research organization, and they maintain a state-of-the-art clinical complex on a sprawling campus just outside of Washington DC. I’ve been seen by the doctors/researchers at the National Institutes of Health (NIH) three times since 2009, when I was part of an NIH study that sought to identify…
  • Recent Research on HSCT, the Stem Cell Therapy That May Soon Change the MS Treatment Landscape.

    The Wheelchair Kamikaze
    4 Jun 2015 | 9:22 pm
    (Please note: the following article is quite long. Though it covers a very important topic and I’ve tried to make it as accessible as possible, I’d suggest getting comfy and grabbing a nice beverage before diving in…) Over the last six months or so, there has been a wave of new and encouraging research published regarding HSCT (Hematopoietic Stem Cell Therapy) for the treatment of multiple sclerosis. HSCT is the type of stem cell therapy in which a patient’s existing immune system is completely eradicated through the use of powerful chemotherapy drugs and is then rebooted via an…
  • Attacked by a Three-Headed Beast

    The Wheelchair Kamikaze
    13 May 2015 | 6:20 pm
    When I first started writing Wheelchair Kamikaze back in 2009 I had very little idea of what these pages might eventually evolve into, but I did know that I didn’t want the blog to take the form of an illness diary, a simple journal of my MS symptoms and day-to-day experiences with the disease. Instead, I wanted to concentrate more on the emotional and perceptual impact of dealing with a progressive crippling disease, of being forced to slowly watch one’s body being consumed from within while trying not to lose one’s head in the process. I also thought the blog would be a good place to…
  • Glimmers of Hope for Progressive MS: Human Stem Cell Trial, Biotin Study Both Show Efficacy

    The Wheelchair Kamikaze
    26 Apr 2015 | 7:05 pm
    Progressive multiple sclerosis is a particularly horrendous and intractable illness. Unlike the relapsing remitting form of the disease, for which there are currently 12 approved treatment options (however imperfect these may be), there is tragically little available for progressive MS patients (one very flawed treatment option for SPMS and none for PPMS). At the recent American Academy of Neurology meetings, held last week in Washington DC, some rays of hope for progressive MS finally shone through, among them studies done on honest-to-goodness human progressive MS patients – as opposed to…
  • A Stranger in Strange Lands

    The Wheelchair Kamikaze
    13 Apr 2015 | 6:47 pm
    Way back in the summer of 1989, just about a month before my 26th birthday, I unintentionally found myself living in South Florida. An unfortunate confluence of bad decisions on my part, ill will on the part of others, and an ample dose of plain old rotten luck landed me in an environ in which I never intended to land. Without getting into the gory details, suffice it to say that for me Florida was a refuge of last resort, a place I had visited fairly often (I’d long had family living there) but one which I’d never even considered a spot in which I might one day actually reside. In fact,…
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    Multiple Sclerosis Research

  • CCSVI saturday

    MouseDoctor
    3 Jul 2015 | 11:00 pm
    Koschack J, Weibezahl L, Friede T, Himmel W, Makedonski P, Grabowski J. Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic Cerebrospinal Venous Insufficiency Debate in a Multiple Sclerosis Forum. J Med Internet Res. 2015 Jul 1;17(7):e159.BACKGROUND:The vascular hypothesis of multiple sclerosis (MS), called chronic cerebrospinal venous insufficiency (CCSVI), and its treatment (known as liberation therapy) was immediately rejected by experts but enthusiastically gripped by patients who shared their experiences with other patients worldwide by use of social…
  • London is the Neuroscience Hotspot

    MouseDoctor
    3 Jul 2015 | 11:00 pm
    GOOGLE HAS BEEN SEARCHING THROUGH NEUROSCIENCE PAPERS TO SEE WHERE THEY COME FROM IN A HOST OF CONDITIONS YOU CAN SEE LONDON AND THE NORTH/EAST USA ARE THE HOT SPOTS FOR VOLUME OF OUTPUTLONDON IS THE ONLY PLACE IN THE WORLD SHOWING RED FOR EACH OF THE SUBJECT AREAS                                                HOT SPOT OF NEUROSCIENCE    HOT SPOTS OF MULTIPLE SCLEROSIS
  • The interleukin two susceptibility gene in MS

    MouseDoctor
    3 Jul 2015 | 11:00 pm
    Wallace C, Cutler AJ, Pontikos N, Pekalski ML, Burren OS, Cooper JD, García AR, Ferreira RC, Guo H, Walker NM, Smyth DJ, Rich SS, Onengut-Gumuscu S, Sawcer SJ, Ban M, Richardson S, Todd JA, Wicker LS. Dissection of a Complex Disease Susceptibility Region Using a Bayesian Stochastic Search Approach to Fine Mapping. PLoS Genet. 2015 Jun 24;11(5):e1005272. Identification of candidate causal variants in regions associated with risk of common diseases is complicated by linkage disequilibrium (LD) and multiple association signals. Nonetheless, accurate maps of these variants are needed, both to…
  • Training on a treadmill helps improve walking

    MouseDoctor
    2 Jul 2015 | 11:00 pm
    Braendvik SM, Koret T, Helbostad JL, Lorås H, Bråthen G, Hovdal HO, Aamot IL. Treadmill Training or Progressive Strength Training to Improve Walking in People with Multiple Sclerosis? A Randomized Parallel Group Trial. Physiother Res Int. 2015 Jun 25. doi: 10.1002/pri.1636. [Epub ahead of print]BACKGROUND AND PURPOSE:The most effective treatment approach to improve walking in people with multiple sclerosis (MS) is not known. The aim of this trial was to assess the efficacy of treadmill training and progressive strength training on walking in people with MS.METHODS:A single blinded…
  • ClinicSpeak: efficacy of fingolimod

    Gavin Giovannoni
    2 Jul 2015 | 10:54 pm
    Fingolimod works in highly-active MS. #ClinicSpeak #MSResearch #MSBlog"Post-hoc subgroup analyses are all the vogue and allow one to decide whether or not a particular population of MSers is more or less responsive to a therapy. A particularly important  group are MSers with so called highly-active MS based on disease activity in the last 12 months and baseline features on MRI."DEFINITION OF HIGHLY ACTIVE MS:  1) ≥ 1 relapse in the previous year and either ≥ 1 gadolinium (Gd)-enhancing T1 lesion or ≥ 9 T2 lesions at baseline  and/or 2) as many or more relapses in the year…
 
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