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’ ⦠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…
August 16, 2016 Columns by Ed Tobias Multiple Sclerosis Fatigue: Puzzling over the Jigsaw Feeling tired?Ā No surprise there.Ā Fatigue is as much a part of living with Multiple Sclerosis as sand is a part of the beach where I live. It’s interesting, then, that neurologists seem to have no good system for measuring levels of MS fatigue or any treatments that are…
August 16, 2016 Columns by Judy Lynn Bloom, Wherever You Fall! An MS Detour Editor’s Note: MS Patient Specialist and Columnist Judy Lynn writes from her unique and engaging perspective as an MS patient reflecting on the challenges that the disease presents and how to cope with them in her daily life. In her debut article for her new Column “You’ve Got Some Nerves,”…
August 15, 2016 Columns by Debi Wilson Is Your Neurologist Listening to What Your MS Is Saying? Editor’s Note: Debi Wilson’s column “Faith of the Mustard Seed” explores a range of important topics that relate directly to the patient experience. In her debut article, she discusses her own experiences with neurologists, and encourages MS to not settle on a specialist until they feel as though their…
August 15, 2016 Columns by Laura Kolaczkowski REAL MS Research Needs You You want to help find answers about multiple sclerosis but donāt know how, and I hear your frustration about being unable to contribute in meaningful ways. Let me share with you the news that REAL MS (Research Engagement About Life with MS) was launched this summer, and I…
August 15, 2016 News by admin MS Patientās Pick of the Weekās News: Aggressive Therapies, Early MRIs, Tysabri and More Hereās my Pick of the Weekās News, as published by Multiple Sclerosis News Today. Best First-Line Treatment for Aggressive MS May Be Equally Aggressive Immunotherapies Sounds like “Fight fire with fire” to me; could be just what is needed. Patients with aggressive onset multiple sclerosis, characterized…
August 9, 2016 Columns by Ed Tobias Don’t Let Multiple Sclerosis Ground You Flight is freedom in its purest form, To dance with the clouds which follow a storm; To roll and glide, to wheel and spin, To feel the joy that swells within; To leave the earth…
August 8, 2016 Columns by admin MS Patientās Pick of the Weekās News: Antioxidant Therapies, Ocrevus, and Other Notables Here is my Pick of the Weekās News, from articles published onĀ Multiple Sclerosis News Today.Ā Antioxidant Therapies Seen as Promising Approach in Treating MS and Like Diseases Maybe antioxidant research could provide another avenue of MS therapy. A review article published in theĀ British…
August 5, 2016 Columns by Laura Kolaczkowski Hospitality Care Service for Clinical Trial Participants This idea is so simple. But it has been overlooked for years until the partners of Gray Consulting, a Philadelphia firm, connected the dots and developed a better way to engage and retain people in clinical trials.Ā Scott Gray, CEO, took time out to speak with me about…
August 5, 2016 Columns by admin Wondering How MS Will Affect Me Today Waking up in the morning and facing the world brings a sense of wonder. Not in the sense of awe, just in wondering how MS will affect me today. Is it a good day or a bad day? What will it bring? Like most people,…
August 3, 2016 Columns by admin Stem Cell Clinics Under Critical Scrutiny in US Stem cell clinics are proliferating in the U.S., where there are now 570 in operation, according to a paper quoted by the New York Times. And concerns are being raised that these clinics are often operating and making claims beyond those allowed by the countryās public health regulatory…
August 1, 2016 Columns by Laura Kolaczkowski FICO Enters Healthcare Arena with Treatment Adherence Scores Do you take your drugs as they are prescribed?Ā It turns out a lot of us donāt and that is a concern to theĀ people in charge of our healthcare dollars. The California Association ofĀ Health Plans estimates that costs for prescription for chronic diseases such as multiple sclerosis, rheumatoid…
August 1, 2016 Columns by Ed Tobias MS Shaming: ‘You Don’t Look Like You Need a Handicapped Tag!’ Do you remember when you applied for a handicapped license plate? I put it off for quite a while after I was diagnosed. After all, I could walk several city blocks fairly easily. I could still play a little tennis. Why did I need to park in a…