Columns

Taming Heat Sensitivity at 100 Degrees

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…

Barefoot Mindfulness: Mastering Stress and Change with MS

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…

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’ … 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.  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…

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 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…

My Life is My Own, MS Cannot Have It

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…

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 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?…

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.  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…

Multiple Sclerosis Fatigue: Puzzling over the Jigsaw

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…

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,”…

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…

REAL MS Research Needs You

  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…

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,…

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 country’s public health regulatory…