Columns

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…

Here’s my Pick of the Week’s 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…

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…

Here is my Pick of the Week’s News, from articles published on Multiple Sclerosis News Today.  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 the British…

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.  Scott Gray, CEO, took time out to speak with me about…

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,…

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 country’s public health regulatory…

Do you take your drugs as they are prescribed?  It turns out a lot of us don’t and that is a concern to the people in charge of our healthcare dollars. The California Association of  Health Plans estimates that costs for prescription for chronic diseases such as multiple sclerosis, rheumatoid…

  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…

Here’s my Pick of the Week’s News, from stories published on Multiple Sclerosis News Today. Nearly 75% of MS Patients in UK Study Went Through Progressive Decline Prior to Death Very few people living with MS or anyone close by affected by the disease can really…

  We may have international cooperation and worldwide this and that, but the fact remains that countries vary drastically from one another in all sorts of ways. Take healthcare as an example, and the costs of treatment. Yes, we have the World Health Organization and there are various health-related initiatives…

Remyelination at the moment is the buzzword to beat all buzzwords in the world of research into, and treatment for, the vicious disease that is multiple sclerosis. Now, as you are reading this, you must have some knowledge of MS and are sure to know about the link between the…

Now they tell me! People diagnosed with what is termed as benign MS can benefit from disease modifying drugs (DMDs), according to a new study. Fourteen years ago, when diagnosed as having MS, the neurologist told me that it was benign. He said it had taken 25 years to progress…

An entry in the comments section of Multiple Sclerosis News Today caught my attention a couple of weeks ago, and peaked my interest. It was a personal tale of one woman’s journey from being paralyzed and told that her condition was “between you and God” to being able to walk again, thanks to HSCT.

Can we all agree that research studies are important and they are necessary to prove whether a concept works or it doesn’t? Even from the biggest failures, we can learn more. We can also all agree that research has to be done via properly conducted studies to be accepted as…