September 13, 2016 by Laura Kolaczkowski Lack of Diversity Hurts MS Studies The importance of getting a representative group of people, also known as subjects, engaged in Ā clinical trials cannot be understated. There is so much that we need to know when it comes to multiple sclerosis, but the picture cannot be complete unless the cohort of subjects includes people from…
September 13, 2016 Columns by Ed Tobias 7 Marathons on 7 Continents for MS Runner Tripping, falling and bloody knees. Been there. Done that. (Who with MS hasn’t)? But this wasn’t me. This was Cheryl Hile and it was happening to her as she was running a half marathon in Carlsbad, California. Cheryl had been running marathons for half a dozen years when, in…
September 12, 2016 Columns by Debi Wilson Are You in the High Risk Category for Developing MS? Early detection is very important for any disease diagnosis.Ā With Multiple Sclerosis, it gives you the opportunity to start a treatment plan early that may help with slowing the progression of the disease. Symptoms of MS vary widelyĀ from person to person and can closely mimic other disease symptoms.Ā Lesions don’t always…
September 12, 2016 Columns by admin MS Patientās Pick of the Weekās News: Myelin Repair, Shape Changers, Misdiagnoses, and Virtual Reality Here is my Pick of the Weekās News, as published in Multiple Sclerosis News Today. Breast Cancer Therapy, Tamoxifen, May Promote Myelin Repair in MS Remyelination could beĀ a new role in MS therapy for a drug that has been used to treat breast cancer for some…
September 8, 2016 Columns by Ed Tobias Have a Say About MS Drugs Anyone with a chronic medical problem knows how expensive drugs can be, and how a drug that you need can be here today ā¦ gone tomorrow on the list of drugs that your health plan will pay for. You also know that cost and insurance coverage aren’t the only…
September 8, 2016 Columns by admin #ECTRIMS2016 – Stay Up to Date with My Pick of Congress Highlights The show comes to town in the next week with ECTRIMS hosting what it describes as āthe worldās largest annual international conferenceā devoted to basic treatment and clinical research in multiple sclerosis. It is being held in Londonās ExCel center from Wednesday to Saturday morning, and will be followed…
September 7, 2016 Columns by Judy Lynn MS Foot Drop and the Road to Physiatry When I first heard about MS āfoot drop,ā I assumed that the manifestation of this symptom would be a sudden and obvious inability to walk properly. Ā I knew many people with MS who used canes and walked with significant stiffness or a “dragging” limb. I filed āfoot dropā away…
September 7, 2016 Columns by admin James Received HSCT for Free, as He Lives in the UK Virtually all the talk about availability of HSCT1 as an MS treatment includes the need to travel long distances to other countries, but U.K. residents can receive the treatment in London, avoiding the journey overseas.Ā Whatās more, it is provided through the countryās social National Health Service (NHS) so, like…
September 6, 2016 Columns by Laura Kolaczkowski The Doctor Doesn’t Always Know Best There was an almost audible gasp in the room as I was making aĀ presentation recently at a multiple sclerosis talk.Ā What did I say that was so shocking?Ā I merely said ā if you donāt agree with your prescribed course of treatment, it is perfectly OK to speak up…
September 6, 2016 Columns by Ed Tobias Take Your MS for a Swim I love the water.Ā Good thing, since I live at the beach. Being in a swimming pool is also good therapy for my MS. It strengthens my core and arms and, when I do a little pool walking, my legs feel a bit stronger.Ā But, I’ve never done any…
September 6, 2016 Columns by Debi Wilson Feeling Your Way Through MS Brain Fog Thinking has become my second job. Never have I had to put so much effort into gathering my thoughts or comprehending the world around me as I do with MS. To say MS has changed my life in so many ways is an understatement! Of all of my MS…
September 5, 2016 Columns by admin MS Patientās Pick of the Weekās News: Siponimod, Thymosin Patent, Orphan Drug, Lifestyle, and Lymphopenia Risk Hereās my Pick of the Weekās News, as published in Multiple Sclerosis News Today. Gilenya-like Therapy Shows Benefit in Secondary Progressive MS Patients in Phase 3 Trial Hereās a potentially encouraging development for anyone with SPMS. Patients withĀ secondary progressive multiple sclerosisĀ (SPMS) who were treated withĀ BAF312 (siponimod),…
September 2, 2016 Columns by admin Taming Heat Sensitivity at 100 Degrees Many people voiced their concerns to me about anyone with MS moving to live in aĀ sunny climate. That worry is understandable. With a disease that includes heat sensitivity, where even a hot shower can make you worse, how can any MS patient move to live in an area where…
August 31, 2016 Columns by Judy Lynn Barefoot Mindfulness: Mastering Stress and Change with MS I often watched āThe Brady Bunchā as a kid. Ā In one episode, Peterās voice changes right before the talent show and he isnāt able to sing his chosen song. His replacement song has been playing on repeat in my head for two months! āWhen itās time to change, youāve got…
August 31, 2016 Columns by admin Welcome or Not, FDA Focuses on Stem Cell Treatments News that the U.S. Food and Drug Administration (FDA) is to hold a public hearing next month to consider greater oversight of stem cell clinics operating in the country is as welcome as it is late. I say “late” because, while the regulators have been twiddling their fingers,…
August 30, 2016 Columns by Ed Tobias Doc Leaves MS Patient ‘Horrified’ ā¦ and Me Too! The other day I received a very troubling direct message from someone on another Multiple Sclerosis website: “I was diagnosed with MS in 2004 but, foolishly, dismissed it. Other than bad spacisity [spasticity] and a few little episodes, I was relatively symptom free. That is until…
August 29, 2016 Columns by Debi Wilson Riding the High-Dose Biotin Train for Progressive MS I knew of no available treatment options for my Primary Progressive MS, so when I heard about the pure High Dose Biotin Protocol I jumped on board! The protocol, created by MedDay in France, revolves around the vitamin Biotin (aka, vitamin B7 or H). It is recommended that the…
August 29, 2016 Columns by admin MS Patientās Pick of the Weekās News: Umbilical Cells, Early Drugs, REAL Research, Hemoglobin, and Fatigue Hereās my Pick of the Weekās News, as published by Multiple Sclerosis News Today. Umbilical Cord Blood-derived Cell Therapy Promotes Remyelination in Mice Now this is different, using umbilical cord stem cells. A cell therapy product derived from human umbilical cord blood cells may be…
August 29, 2016 Columns by Laura Kolaczkowski Wait! Here’s a Pill for Your MS Most of us with MS rely on pharmacological assistance to make it through the day.Ā I know taking pills by the handful is the regimen of many people, whether they are sick with multiple sclerosis or one of many other disorders.Ā I was surprised at my own emotional reaction…
August 26, 2016 Columns by admin Help for Anyone Newly Diagnosed with MS Being diagnosed with MS can be more than a bit of a shock at first. Yes, you finally know what youāve got, what all those symptoms you’ve having mean, and you have heard what your neurologist told you. Well, you may have heard, but you didnāt take it in…
August 24, 2016 Columns by admin My Life is My Own, MS Cannot Have It It is often said that real life mimics television, and one hitĀ TV series certainly reflects the theme: āmy life is my own, MS cannot have it.ā During the 1960s, 1967ā68 to be exact, an iconic television show ran on Sunday nights called “The Prisoner.” It starred Patrick McGoohan as…
August 23, 2016 News by Judy Lynn MS Hugs Me, Hugs Me Not In the two years following my diagnosis, I had many bouts of chest pain, breathing difficulties, and sharp stomach pains. I worried that some other terrible illness was right around the corner. Four EKGs, three ultrasounds, two pulmonary function tests, and one colonoscopy later I had a surprisingly good bill…
August 23, 2016 Columns by Ed Tobias MS and Kinect: Can an Xbox Camera Improve My Walking? Don’t you just love the walking test when you see your neurologist for your annual exam? “Let’s see how fast you can walk to me,” she says. The test is called the T25-FW, and it measures how long it takes you to walk 25 feet. But, what about how…
August 23, 2016 by Debi Wilson Don’t Let Your MS Bully You! Even before my 2010Ā Primary Progressive MS diagnosis, I wasĀ influenced by my inner voice. Way too many times I’ve given into my insecurities and visions of all the terrible scenarios that could occur. Everyone has that little voice. The one that will whisper, “you can’t do that,” or, “why bother?…
August 22, 2016 Columns by Laura Kolaczkowski HSCT as MS Therapy: An American’s Tale Karen Staman and I met a while back through a National Institute of Health and Duke University research collaborative effort.Ā She is a scientific writer by trade, which means she sits through lots of conversation and puts everyone elseās thoughts into cohesive sentences that can then be published, and…
August 22, 2016 Columns by Patricia Silva, PhD Feldenkrais: Awareness of Movement for Those with MS In a fair world, reading books would burn the most calories, eating ice cream would be chock-full of antioxidants and vitamins, and no one would have multiple sclerosis. But, like many other people, I have MS and have to live with fatigue, cognitive issues, trouble walking, and so much more…
August 22, 2016 Columns by admin MS Patient’s Pick of the Week’s News: Blood Tests, Marijuana, Cameras, and More Hereās my Pick of the Weekās News, as published in Multiple SclerosisĀ News Today. Blood Test Seen to Distinguish MS from Other Neurological Conditions A faster way to tell the difference between neurological diseases could mean earlier access to treatment for MS patients. Researchers atĀ Michigan State…
August 19, 2016 Columns by admin Delays in Seeing Specialists a Growing Barrier to MS Diagnosis and Treatment There can be absolutely no excuse for anyone experiencing the first signs and symptoms of neurological conditions like MS having to wait a long time to see an appropriate specialist, such as a neurologist. Delays in seeing specialists is a complaint often heard from patients in variousĀ countries, and it…
August 17, 2016 Columns by Laura Kolaczkowski CVS Prescription Plan Drops Big Name MS Drugs from 2017 Formulary The CVS Caremark coveredĀ insurance plan has dropped Avonex, Plegridy and Extavia, three multiple sclerosis disease-modifying therapies, from their 2017 formulary. You say, OK, but what does that really mean? If your prescription insurance is through CVS Caremark, and you want one of those drugs or one…
August 17, 2016 Columns by admin New Pre-HSCT Treatment May Be the Future, but HSCT with Lower Dose Chemo is Right Choice for MS Patients Now News that scientists in the U.S. are working to find a new pre-HSCT treatment to carry out stem cell transplants without the need for chemotherapy, as published in Multiple Sclerosis News Today, leaves me with mixed feelings. While such a development could potentially be great news and an…