Columns

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…

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…

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…

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…

#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 ā€œthe worldā€™s largest annual international conferenceā€ devoted to basic treatment and clinical research in multiple sclerosis. It is being held in Londonā€™s ExCel center from Wednesday to Saturday morning, and will be followed…

MS Foot Drop and the Road to Physiatry

When I first heard about MS ā€œfoot 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 ā€œfoot dropā€ away…

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 Whatā€™s more, it is provided through the countryā€™s social National Health Service (NHS) so, like…

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 donā€™t agree with your prescribed course of treatment, it is perfectly OK to speak up…

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…

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…

MS Patientā€™s Pick of the Weekā€™s News: Siponimod, Thymosin Patent, Orphan Drug, Lifestyle, and Lymphopenia Risk

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

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…

Barefoot Mindfulness: Mastering Stress and Change with MS

I often watched ā€œThe Brady Bunchā€ as a kid. Ā In one episode, Peterā€™s voice changes right before the talent show and he isnā€™t able to sing his chosen song. His replacement song has been playing on repeat in my head for two months! ā€œWhen itā€™s time to change, youā€™ve got…

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,…

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…

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…

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…

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 youā€™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 didnā€™t take it in…

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: ā€œmy life is my own, MS cannot have it.ā€ During the 1960s, 1967ā€“68 to be exact, an iconic television show ran on Sunday nights called “The Prisoner.” It starred Patrick McGoohan as…

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…

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?…

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 elseā€™s thoughts into cohesive sentences that can then be published, and…