Columns

Anyone with a chronic medical problem knows how expensive drugs can be, and how a drug that you need can be here today … 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…

The show comes to town in the next week with ECTRIMS hosting what it describes as “the world’s largest annual international conference” devoted to basic treatment and clinical research in multiple sclerosis. It is being held in London’s ExCel center from Wednesday to Saturday morning, and will be followed…

When I first heard about MS “foot drop,” I assumed that the manifestation of this symptom would be a sudden and obvious inability to walk properly.  I knew many people with MS who used canes and walked with significant stiffness or a “dragging” limb. I filed “foot drop” away…

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. What’s more, it is provided through the country’s social National Health Service (NHS) so, like…

There was an almost audible gasp in the room as I was making a presentation recently at a multiple sclerosis talk.  What did I say that was so shocking?  I merely said – if you don’t agree with your prescribed course of treatment, it is perfectly OK to speak up…

I love the water.  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.  But, I’ve never done any…

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…

Here’s my Pick of the Week’s News, as published in Multiple Sclerosis News Today. Gilenya-like Therapy Shows Benefit in Secondary Progressive MS Patients in Phase 3 Trial Here’s a potentially encouraging development for anyone with SPMS. Patients with secondary progressive multiple sclerosis (SPMS) who were treated with BAF312 (siponimod),…

Many people voiced their concerns to me about anyone with MS moving to live in a 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…

I often watched “The Brady Bunch” as a kid.  In one episode, Peter’s voice changes right before the talent show and he isn’t able to sing his chosen song. His replacement song has been playing on repeat in my head for two months! “When it’s time to change, you’ve got…

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,…

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…

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…

  Here’s my Pick of the Week’s 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…

Most of us with MS rely on pharmacological assistance to make it through the day.  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.  I was surprised at my own emotional reaction…

Being diagnosed with MS can be more than a bit of a shock at first. Yes, you finally know what you’ve 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 didn’t take it in…

It is often said that real life mimics television, and one hit TV series certainly reflects the theme: “my life is my own, MS cannot have it.” During the 1960s, 1967–68 to be exact, an iconic television show ran on Sunday nights called “The Prisoner.” It starred Patrick McGoohan as…

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…

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…

Even before my 2010 Primary Progressive MS diagnosis, I was 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?…

Karen Staman and I met a while back through a National Institute of Health and Duke University research collaborative effort.  She is a scientific writer by trade, which means she sits through lots of conversation and puts everyone else’s thoughts into cohesive sentences that can then be published, and…

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…

Here’s my Pick of the Week’s News, as published in Multiple Sclerosis 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 at Michigan State…

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 various countries, and it…

The CVS Caremark covered 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…

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…

Feeling tired?  No surprise there.  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…

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,”…

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…

  You want to help find answers about multiple sclerosis but don’t 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…