Columns

As an MS patient (and an insatiable polymath), I’m always on the lookout for new information. Recently, I learned about an interesting concept in Japanese culture called “Ma,” and ever since, I’ve been trying to work out how I can incorporate more of it into…

It happened on the coldest day of the season. It was 16 degrees F with wind chill. I was outside, using my electric scooter to take Joey, our cocker spaniel, for his early morning walk. Joey had just finished his business. I was tying the poopie bag when I heard…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Are you still driving? Should you be?” from Dec. 27, 2018. At…

It is 2 a.m. and I am awake. I sit on the couch with my head in my hands. The leg pain that broke my slumber is now extreme. I have taken my medications, used my topical, and applied heat. All to no avail. Exhaustion meets pain as my eyes…

CHMP Favors Mayzent as Oral Treatment Specifically for Active SPMS Patients in EU Mayzent (siponimod) is one of the newest disease-modifying treatments (DMT). I’m pleased that the Committee for Medicinal Products of Human Use (CHMP), which reviews treatments in the European Union, has recommended that the DMT be approved…

Fear grips me. Marijuana relaxes, eases pain, and helps my body work better. It also stirs paranoia, but only when you let it. In bed, a fretful waking dream. This is a problem when you actually have something to be paranoid about! I don’t remember all my last times…

Google has quietly teamed up with Ascension, one of the largest healthcare organizations in the United States, to process the medical records of millions of people. According to The Wall Street Journal, “Project Nightingale” involves all sorts of information about things like lab results,  diagnoses, and hospitalization records, and…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Do We Need a Personalized Approach to Treating MS?” from May 23,…

I remember a time without televised ads promoting medication. We had access to information through our physician or a card catalog. Pharmaceuticals are now a mainstay on our airwaves. And although prevalent, these ads previously had been inapplicable to me. Until now. An ad for Ocrevus (ocrelizumab) aired a…

EMA Safety Group Advises Lemtrada Be Limited to ‘Highly Active’ RRMS Patients at Hospitals with ICUs I’m highlighting this report because, like several Europe-based doctors I know, I think that this decision is an overreaction. While there have been serious complications associated with Lemtrada (alemtuzumab), forcing a patient to…

I’m not a superstitious person always on the lookout for signs and omens. I don’t read the wrappers on Dove chocolates or seek life advice from the paper slips inside fortune cookies. I consult my horoscope but merely for the entertainment value. However, the last few months have been rough,…

I didn’t file a column last week due to medical reasons. It’s a perfect excuse for a patient columnist — we don’t need a dog to blame for eating our homework. The multiple sclerosis dog is more than happy to put us on the floor; in my case, even three…

What worries you most about living with multiple sclerosis? I’m catching up with a small survey by Can Do MS, an organization that promotes health and wellness education programs. The survey results, released in September, show that disease progression, financial concerns, and loss of independence are at the top…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Grey Matter Atrophy in MS Shown to Follow a Pattern” from July…

Living with secondary progressive multiple sclerosis is a lesson in adaptation. The constant is change. This disease has given me sea legs. Nevertheless, some days have me fooled. When I think I finally have it in check, MS calls “checkmate!” And I remember. Let go of the reins, Jenn.

The times we’re living in feel surreal to me. I’m not talking about the current state of U.S. politics, though my opinions could fill a book. I’m talking about how I feel when I read about advances that have been made since my diagnosis three decades ago, and…

Vumerity Approved in US as Treatment for RRMS and Active SPMS By my count, Vumerity is the 18th disease-modifying therapy (DMT) that the U.S. Food and Drug Administration (FDA) has approved for multiple sclerosis (MS). It’s one of very few approved for secondary progressive MS (SPMS). I find…

It’s time for another update on how I’ve been doing with my Lemtrada (alemtuzumab) treatments. The bottom line is that I’m doing well. Lemtrada is a disease-modifying therapy (DMT) delivered in two stages. The first stage entails a series of five daily infusions, while the second stage involves…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “MS Lesions and Silent Inflammation” from Aug. 16, 2018. Have an experience you…

If I told you that standing on your head would cure multiple sclerosis (MS), would you do it? I am fairly sure you would find a way to do so. At least once a week, I hear of a miracle cure for MS. Well-meaning individuals tout the latest and greatest…

Higher Intellectual Ability, Early-life Physical Activity May Protect Against Cognitive Impairment in MS, Study Suggests The finding that physical activity provides a protective effect for cognitive abilities makes sense to me. I recently listened to a webinar discussing brain atrophy, which has a direct relationship with cognitive impairment, and…

If there’s one thing the internet is good for, it’s inspirational quotes. They’re usually paired with a picture of a woman at the beach, her arms open to the sunrise, walking through a field of flowers, or raising her eyes to a sky full of stars. Or kittens. Kittens are…

By 2017, over 50,000 people with disabilities in the U.K. had lost their accessible vehicles due to reassessments required by Personal Independence Payment (PIP), a financial assistance program for people with disabilities. Motability Scheme is a program that provides financial assistance to help people lease an accessible…

A question raised by neurologist Gavin Giovannoni on the Barts-MS blog lit up my radar recently. Dr. G asked whether “elderly” people with MS should be treated differently than those who are younger. The question arises because a case of progressive multifocal leukoencephalopathy (PML), a serious brain disease,…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Do you experience memory loss? Do you feel it is due to MS?”…

I am in a state of anxious exhaustion. Anxiety has been a lifelong companion that has presented itself in various ways since childhood. In hindsight, I can recognize triggers and reactions. During times of anxiety, I’ve felt as if I was losing my mind. Over the years, I’ve learned…

Why is my body betraying me? As an advocate and a person with chronic illness, this question surfaces often. Many people with chronic illness feel that their body has failed them. I can understand the reasoning behind the question. At times, the very things many take for granted are the…

#ECTRIMS2019 – Are Injectables Inappropriate for Active Relapsing MS Treatment? Injectable disease-modifying therapies (DMTs) have been around for a long time. I took part in a Phase 3 clinical trial for Avonex (interferon beta-1a) in the mid-1990s. These treatments were the only game in town back then, and…

As I sit down (nothing unusual there — all I do these days is sit down!) and write this, I’m 62 years and one day old. On Saturday morning, it felt like I still had a few days to go before I reached the heady height of a 2-year-old. I’m…

This is not the week to tell me how good I look … even if I look and feel good. The week of Oct. 13 is Invisible Disabilities Week. As we all know, multiple sclerosis (MS) can be as invisible as Casper the Ghost. Invisible Disabilities Week isn’t limited…