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 “Tremors Caused by MS” from April 30, 2018. What’s shaking? If you…
Columns
I am balancing my laptop on one pillow and a leg brace. I have myriad MS-related health issues; alas, this is not among them. After meniscus surgery, aggressive arthritis, and a loss of cartilage, I’m facing knee replacement. Due to a busy schedule and the sustaining effects of Rituxan (rituximab),…
It’s tough paying for medications. Whether they’re for multiple sclerosis (MS) or another illness, Americans are having a hard time coming up with the cash needed to cover the cost of their meds. Many people are developing workarounds and compromises to deal with the problem. And in some…
Cleveland Clinic Neurologist Applauds Mayzent’s FDA Approval, But Surprised by Those It May Not Treat When I wrote my “MS Wire” column a few days after Mayzent’s approval, I wondered why the FDA had OK’d the medication for active secondary progressive multiple sclerosis (SPMS), but not…
The Unplayable Piano
What do a broken-down, out-of-tune piano and multiple sclerosis have in common? Well, they’re both disorderly and confusing, to say the least. But there’s something else — they have the potential to bring about something positive. I learned this from a podcast called “Hidden Brain,” specifically from an…
Going Mobile
In February of last year, I stopped. Walking more than a few steps was suddenly impossible. I’d fought, taken every medication and supplement possible, but I’d lost. Maybe positive thinking and mindfulness would have helped, but for me, that was a step too far! Research, organization, and…
Editor’s note: “Need to Know” is a series inspired by common forum questions and reader comments. Have a comment or question about MS? Please visit our forum. This week’s question is inspired by the forum topic “Tinnitus and MS: An Annoying Combination” from Jan. 4, 2017. What is…
Be the Change with Walk MS 2019
Fatigue falls hard as I look out on the first hot day of the year. I struggle to focus as my head bobs. This is my new normal. The attacks are merciless,…
As you might have heard, a disease-modifying therapy (DMT) for patients with active secondary progressive multiple sclerosis (SPMS) was approved a few days ago. That’s great news. A medication targeting SPMS is overdue, but it could be better. The DMT is Mayzent (siponimod), a tablet that’s taken…
When I was younger, I assumed that I wouldn’t require a mobility device until much later in my life. I wasn’t prepared for needing to use a cane or a walker in my 50s. My 2010 multiple sclerosis (MS) diagnosis rearranged my life in many ways. And having…
MS Patient Groups React Favorably to Mayzent Approval, But Question Therapy’s Price Tag The approval of this medication is very good news. However, as the headline indicates, it comes with a relatively hefty cost. It’s approved for active secondary progressive multiple sclerosis (SPMS), and many of us have SPMS…
Always in the Kitchen at Parties
My nephew James has taken an interest in this column since having a starring role in it a few weeks ago. We were at his mum’s 60th birthday party. He casually asked, “What are you going to write about next week?” A good question. I answered with a…
There are two types of people with MS: Those who have bladder problems and those who will have them. That may be an oversimplification but I’d be willing to bet that you, like me, have had that gotta-gotta-go problem too many times to count. Sometimes you make it…
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 “What do you do to help strengthen your cognitive abilities?” from…
Losing Fear of Change with SPMS
I am a strategist. I think things through. This attribute is borne of necessity. A birthday dinner is not complete without my exit plan. As I wait to be served, I realize the booth is a bit low. I smile, blow out my candle, then scope out things…
You know that the use of marijuana as a medicine and its derivative cannabidiol (CBD) is close to being widely accepted as a useful natural product when articles about its pain-relieving properties appear in Consumer Reports. Yes, I’m referring to the nonprofit magazine that provides unbiased ratings on products…
MS News that Caught My Eye Last Week: Walking Med Trial Recruiting, DMT Risk Tolerance, Sex and MS
Phase 3 Trial of ADS-5102 Recruiting Participants of All MS Types This medication is similar to Ampyra (dalfampridine) because its goal is to improve walking in those with MS. It sure would be nice if we had another medication approved that could do that. Though this trial began recruiting…
Remember, Remember
When I first learned that I had multiple sclerosis in late January 2004, the thing I worried about most was losing my mind. No, I’m not referring to stressing out, going bananas, cracking up, going off the deep end, or coming unglued — though all of those were distinct…
Singing the Bureaucracy Blues
You think getting a chronic illness is as bad as it’s going to get, but then you quickly realize that you’ve been catapulted into a netherworld. There’s no stepping through the back of the wardrobe into Narnia — I’m pretty sure C. S. Lewis didn’t envisage disabled access furniture!…
If you’re a member of the baby boomer generation, or if you just like the music of the 1960s and ’70s, you probably know Paul Simon’s “50 Ways to Leave Your Lover“: “‘The problem is all inside your head,’ she said to me. ‘The answer is easy…
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 “What is Trigeminal Neuralgia?” from May 2, 2018. What causes…
Living with secondary progressive multiple sclerosis is a lesson in discovery. I strive to manage life with MS one day at a time. My disease touches all aspects of my life. One of the elements it affects is intimacy: closeness, affinity, warmth, trust, and mutual affection. Intimacy is friendliness,…
When you’ve lived with multiple sclerosis (MS) for as long as I have, you sometimes forget or block out negative experiences you’ve had over the years. As The Rolling Stones put it, “Time is on my side.” One particular memory seems distant, but…
About 15 disease-modifying therapies (DMTs) are available to treat MS these days. So, choosing which to use can be daunting. I’ve been treated with four DMTs since I was first prescribed Avonex (interferon beta-1a) back in 1996. Each time I’ve switched treatments, my neurologist has suggested a number of…
I have always found group settings to be challenging because of my shy and quiet personality. While I do fine talking to people one-on-one, gatherings of three or more can make me squirm. Years ago, the company I worked for held monthly bonding sessions for…
Non-contrast MRI Effective in Monitoring Progression of MS, Study Shows There’s been increased interest in the risks versus the benefits of using gadolinium to make lesions more visible on an MRI. The U.S. Food and Drug Administration issued an advisory last year raising the level of…
Julian, the doorman at the London Comedy Store, is giving me his biweekly telling off about drinking. It’s biweekly because he and the other regular doorman, Mark, take turns helping me. I’ve known both of them for more than 30 years, though to be fair, in the…
A post in one of the MS social media groups I follow recently asked whether kids can have MS. The writer was worried about her 3-year-old. One commenter replied that her son was diagnosed when he was 9. But, she wrote, his symptoms actually began to appear when he…
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 “Chair yoga” from April 14, 2018.
Visibly Me, Visible MS
Multiple Sclerosis Awareness Month has arrived, lasting throughout the month of March. All things orange and popular hashtags flood social media sites. Awareness months like this have great value, though some may disagree. Awareness months become vessels to engage and encourage individuals and communities to get involved.