Columns

There is no guidebook to living with a chronic, progressive, and incurable disease. Even if such a book existed, it would only be somewhat applicable, as things change on a daily basis. We are all as unique as this disease, yet have one commonality: pain. Before my multiple sclerosis…

With apologies to Edgar Allan Poe, quoth the Lemmie, “Nevermore.” As I write this, the final brown bag of Lemtrada (alemtuzumab) has just begun to drip into a vein in my left arm. If all goes “as advertised,” this will be the final disease-modifying therapy I’ll ever receive.

My morning ritual of showering for a fresh start to my day has progressed to a once-a-week occurrence. Like everything else that my multiple sclerosis (MS) affects, less shower time is not by choice. I take sponge baths daily of course, but actual showers are reserved for when I…

Acute Acalculous Cholecystitis Linked to Lemtrada Use in RRMS Patients, FDA Reports The makers of Lemtrada have added the possibility of another serious side effect to the warning carried on the therapy’s label. The addition follows a Food and Drug Administration review that discovered a potentially serious…

The stars sometimes align, even for us atheists. My son was making a fleeting weekend visit from his last year at his university. It’s all we were going to see of him over the Easter period. He’s taking it very seriously and aiming for top grades in math. The week…

Do you have a question or comment about MS? Can you answer someone else’s question? We’ve just created an MS Forums section on Multiple Sclerosis News Today designed to spark conversations about our MS and to try to provide some answers from reliable sources when you have a…

Editor’s note: Tamara Sellman continues her series on the “MS alphabet” with this column referencing terms starting with the letters “U” through “Z.” This is the last post in this series.  Symptoms of MS Uhthoff’s phenomenon People with MS are often heat-sensitive and experience overheating due to…

Today is Walk MS, and for the first time since my diagnosis, I am not there. While I am not one to feel sorry for myself, this stings. I miss being among the sea of impassioned orange warriors. I miss the tears that fall as cheers accompany me through…

After a delay in treatment in late December thanks to a nasty head cold, and the after-effects of contracting the flu in February necessitating another delay, I finally received my second six-month dose of Ocrevus (ocrelizumab) in mid-March. Much like the first time, the infusion was uneventful. I had no…

It is noon on Wednesday, and I am sitting in a chair in our living room. My wife holds two books against my hips, one on either side, while Stefani, my occupational therapist, measures the width — measuring me for a wheelchair. Like a lot…

While growing up, I loved seeing fireflies (or lightning bugs, as I called them) at night. My friends and I would chase them, trying to grasp one. There was something about the light and their ability to shine in the blanket of darkness that engulfed us. We felt…

As you read this, I likely will be in the middle of, or finished with, my second round of Lemtrada (alemtuzumab). Hopefully, this will be the final round of this disease-modifying therapy (DMT), and the final MS treatment of any kind, for me. Though some have required more,…

On Good Friday, my family and I took a three-day road trip to lay my husband to rest. Our goal was to honor his last wishes and set his ashes free in the wilderness that he so loved. My husband enjoyed going archery hunting almost every fall, until a…

Online Meditation Course Seen to Help MS Patients Manage Symptoms in Clinical Trial Can someone use a website to learn how to meditate, and then do it well enough to have their MS symptoms improve? Well, maybe. This small study reports that patients who completed an online…

When I tell people I have multiple sclerosis, I usually get one of three responses: • “Oh, no! I feel so bad for you!” (Pity) • “Is that the one with the telethon?” (Confusion) • “I know all about that disease! My sister-in-law’s cousin’s college roommate has…

Let me introduce you to my wife, Jane, by cheekily lifting the title “Be My Wife” from possibly the only accessible track off Bowie’s seminal ’70s album, “Low.” Through these weekly columns I’ve mentioned her often enough, but I’ve never formally introduced her. Mea culpa. I didn’t have…

A few weeks ago I warned of the dangers that are possible when people turn to social media for information about their MS. But there’s another danger that technology and the internet have brought us: access to our own medical records. Sandra G. Boodman has taken…

Editor’s note: Tamara Sellman continues her series on the “MS alphabet” with this column referencing terms starting with the letter “T.” Symptoms of MS Tinnitus You may already know this as “ringing in the ears.” But ringing as a descriptor is a bit subjective, as tinnitus…

Have you ever been touched by the actions of one of your doctors? I hope we all have experienced special moments with our care providers because these times break down the authoritarian nature of medicine and allow us to interact as people rather than patients. A heartwarming moment took…

While Reese’s Peanut Butter Cups are the true “two great things that go great together,” calcium and magnesium take first place for those with MS. Many proponents of special diets for MS encourage the consumption of foods high in this mineral dynamic duo (along with other vitamins needed for…

My column last week was a recap of my journey to a primary progressive multiple sclerosis (PPMS) diagnosis. This week’s column continues that theme by showing a glimpse of what it is like to live with PPMS on a daily basis. To say that having a disability like…

Editor’s note: Tamara Sellman continues her series on the “MS alphabet” with this column referencing terms starting with the letter “S.” Last in a series of five. Symptoms of MS Spasticity This refers to the muscle stiffness and issues with muscular control and abnormal muscle tone that…

I spent the majority of my life as a people pleaser. From the time I was young, I equivocated “yes” with likability; please and be pleased. As the years passed, compromising my own needs became second to meeting those of others. While I genuinely enjoy…

It was late May 2014, and my wife and I were on our first trip to the Cleveland Clinic. We’d been to Cleveland for a wedding a few years earlier but had been too busy to explore. We booked a room at the…

We’re all familiar with the yearly observance of MS Awareness Week and MS Awareness Month to raise awareness about multiple sclerosis. Considering that so many rare diseases, such as Graves’ disease or Ehlers-Danlos syndromes, go largely unnoticed, the MS community is blessed with its fair…

We are approaching the conclusion of National Multiple Sclerosis Awareness Month, but those of us with MS know that the responsibility to educate is unending. I was pondering what my topic would be this week. As awareness month exits, I want to proffer an encouraging message. This…

For years, my wife and I have disagreed about smells. She smells something and I don’t. I tell her that her nose is too sensitive. She tells me to get out the air freshener. Over the 37 years since my MS diagnosis, this conversation has happened thousands of times.

I have lived with the diagnosis of primary progressive multiple sclerosis (PPMS) for almost eight years. For many years prior to that diagnosis, I was confused by what could be causing my abnormal gait, extreme fatigue, blurred vision, and trouble concentrating. During that time, I completed many diagnostic tests, dealt…

Blood Stem Cell Transplants Improve RRMS Patients’ Disability, Phase 3 Trial Shows Here’s yet another study that shows the benefits of autologous hematopoietic stem cell transplantation, or AHSCT — the procedure in which a patient’s own stem cells are harvested and used to rebuild the…

Six months ago, I was a reasonably svelte 14 and a half stone. I’m not sure how I managed it, but it was certainly before pitting edema wrapped itself around my shins and calves like bulbous sacks of wineskins. I managed to get on the scales a while…