MS

My Tired Is Not Your Tired

Fatigue. Most people with chronic illness ā€“ especially MS ā€” experience this. My energy levels vary from one day to the next. I am tired of being tired (pun intended). There are days when getting out of bed is challenging, and times when I literally have to force…

Transitioning from MS Patient to Cancer Caregiver

I am making the transition from multiple sclerosis patient to cancer caregiver. On May 11 my family’s world turned upside down when my husband of 41 years was diagnosed with advanced Ā pancreatic cancer. My caring husband, who has always loved and protected me, is now the one in…

Fear the Future? Change the Way You Think

Fear of the future will likely rear its ugly head more often than you’d like when you have multiple sclerosis or any serious chronic disease. It can be difficult to keep your mind from wandering to a very dark place. Worries about how fast your disease is progressing,…

Going All In for Ocrevus ā€” Together

ā€œIs the MS drug news good for u?ā€ my friendā€™s text asked. It was Wednesday morning, March 29. Genentech had just announcedĀ  that Ocrevus, the ā€œFirst and only approved disease-modifying therapy for primary progressive form of multiple sclerosis (PPMS) ā€“ one of the most disabling forms of…

MS and the Fear of Missing Out

A couple of weeks ago I had a curious encounter with the friend of a friend. I live in a small town. In some ways we’re all at least neighbors. Huddled in a small group at the local grocery store, we were chatting about our experiences with the…

MS Advocates Hope Better Data Will Mean Better Care

The practice of collecting data about how we MS patients go about living our lives, and then using that data to improve our patient care, seems to be gathering steam. In the European Union a projectĀ called Real World Evidence Data, or RWE, is working outside of the…

Play On: What Baseball Has Taught Me About MS

When people ask me what I love, I usually respond, ā€œGod, my family, and St. Louis Cardinals baseball ā€¦ in that order.ā€ Other than the Razorbacks, Arkansas (my home state) doesnā€™t have much in the way of athletic bragging rights. Both when I was a kid and now,…

No MS Diet Miracles for Me, Thank You

I’ve spent a lot of time latelyĀ around people following special diets. They’re either voluntarily cutting carbs, counting calories, following a diet plan, or fasting, but not because they have a medical condition. Mostly they dietĀ to feel better, lose some weight, or reset their metabolism. I wish them well, even as…

#ACTRIMS2017 – MS, the Gut and Probiotics

Harold Weiner, MD, believes in using probiotics to help treat multiple sclerosis.Ā He is such a believer that he did a presentation on the subject ā€” “Probiotics in Multiple Sclerosis” ā€” at the just-concluded Americas for Treatment and Research in Multiple Sclerosis (ACTRIMS) 2017 Forum in Orlando. The event…

Does your MS Fatigue and Energy Need a Boost?

Does your MS fatigue and energy need a boost? I know mine does; having multiple sclerosis drains my battery very quickly. Add to that a terrible cold I had recently, and my fatigue has doubled, and my energy has left the building! While looking for a magic…

Pills, Shots or Infusions for Your MS?

Oral multiple sclerosis meds appear, more and more, to be the first choice of patients who are just beginning to receive an MS treatment. A recent report by the independent marketing research firmĀ Spherix Global Insights shows thatĀ oral disease-modifying therapies captured a significantly higher…

Are You In or Out of the MS Closet?

An MS patient who reads my column sent a personal message last week. It began:Ā “Sorry about the secrecy. Iā€™m in the closet! Seriously, I havenā€™t told many people about my RRMS diagnosis, for many reasons. I really donā€™t want my kids knowing. ā€¦ I want to spare them that…

Tinnitus and MS: An Annoying Combination

Loss of hearing symptoms such as tinnitus are not usually attributed to multiple sclerosis, but for those with MS whoĀ do experience tinnitus, like me, they can be very annoying. The American Tinnitus Association (ATA) describes the symptoms as: “the perception of sound when no actual external noise is present.

Hope Lights the Way to a Cure for MS

ā€œThis first candle in the advent wreath,ā€ I told my kids as I clicked the lighter and set its flame atop the wick, ā€œrepresents hope. What does that word mean to you guys?ā€ In the warm glow of the purple taper, we talked about everything from wishes and…

Phoebe Scopes, British HSCT Pioneer in Moscow, Part 2

Last week, I introduced you to Phoebe Scopes, the very first MS patient from another country to undergoĀ hematopoietic stem cell transplantation (HSCT) in Moscow. Today, in Part 2, Ā we pick up the story of the 46-year-old who lives in London. Ian: So, you had done lots of research. How…

I Am Very Thankful for My MS Diagnosis

  I am thankful for a lot of things in my life and my multiple sclerosis (MS) diagnosis is one of them. Before learning it was MS, I was on a very long roller-coaster ride of unexplained symptoms. Test after test came back normal. Yet, I still had weak…

Have Scooter, Will Travel

“Round, round, get around. I get around.” I was humming that classic 1960s Beach Boys tune this morning (yes, I’m that old) as I thought about a feature story that I saw on one of the TV networks recently. The story profiled Cory Lee. Cory has spinal muscular…

My MS and Faith of the Mustard Seed

I have written nine articles so far with shared ideas of what has helped me in this overwhelming battle with multiple sclerosis. My experiences and successes are shared in the hope that others will be helped as well. This 10thĀ article is about what comforts and sustains me the most…

Familial Connections Cannot Be Coincidences, Can They?

Life can be really strange and not always fathomable to someone like me who is not blessed with neither medical nor scientific qualifications. On a purely technical basis, I am just an ordinary guy. What I do know about diseases, illnesses and conditions ā€“ call them what you will ā€“…

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…