living with MS

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 32nd annual congress of the European Committee for Treatment and Research in Multiple Sclerosis, widely referred to as ECTRIMS, will kick off on Wednesday, Sept. 14, in London. The four-day event is partnering this year with the Annual Conference of Rehabilitation in MS  (RIMS), the European network for best…

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…

Previous studies have pointed toward certain lifestyle factors such as nutrition, sedentary behavior, and stress as possible key determinants in multiple sclerosis (MS) progression but few studies have been dedicated to learning more about the impact of lifestyle risk factors on patient disability and disease progression. A recent study supports the…

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…

  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…

The Quebec Division of the Multiple Sclerosis Society of Canada (MSSC)  announced that this year’s 27th Medavie Blue Cross MS Bike, a fundraising bike ride on roads alongside St. Lawrence River, will take place Aug. 27 and 28 in the Mauricie region. A total of 900 cyclists are set to participate in…

The National Multiple Sclerosis Society  announced that it has dedicated more than $1 million to support a clinical study at the University of Iowa that will compare two types of diet and their effectiveness in easing fatigue in people with multiple sclerosis (MS). “The National MS Society is committed to identifying wellness solutions to…

An innovation in multiple sclerosis (MS) research has been launched by the iConquerMS initiative — a longitudinal, prospective study called “REAL MS,” an acronym for “Research Engagement About Life with Multiple Sclerosis,” with a goal of accelerating research into personalized treatments for MS patients. This type of study collects repeat…

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…

People with relapsing multiple sclerosis who use a device called RebiSmart (Merck Serono) to self-inject medications like Rebif (interferon [IFN] beta-1a) are more likely to take their therapies on a regular schedule and adhere to that schedule, resulting in fewer relapses than those not using the device, according to a retrospective study by  researchers…

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…

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?…

A new video series for multiple sclerosis patients in the U.S. looks to help them better understand the complex legal and planning issues they face. The series, put together by the National Academy of Elder Law Attorneys (NAELA) and Stetson University College of Law, in consultation with the National Multiple Sclerosis Society, is…

General practitioners (GPs) in England lack confidence in initially assessing and referring onward people with neurological symptoms, especially those with multiple sclerosis, and believe they could benefit from better training in identifying and managing neurological patients. One result, according to a report published by the Neurological Alliance, titled “Neurology and primary care: improving the…

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…

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…