The MS Wire - A Column by Ed Tobias

When I began writing about multiple sclerosis, I never imagined that, one day, I’d be writing a column about guns. But here I am, staring right into that barrel. The other day as I cruised around MS websites, I ran across a post from a woman who was…

I’m an old guy, and it’s been a looonnnggg time since I was diagnosed with multiple sclerosis. This, however, is not the case with BJ Baker. BJ is in his late 20s, and was having a very bad day. He was too tired to do a (seemingly) simple…

With last month’s approval of the multiple sclerosis drug Ocrevus, I’ve again heard the plea “But how can I afford it?” Ocrevus carries a price tag of about $65,000 a year. That’s not high compared to some other MS drugs, but it still can mean a higher…

There was much fanfare when the multiple sclerosis drug Ocrevus (ocrelizumab) finally was approved by the U.S. Food and Drug Administration last week. Perhaps a little too much fanfare? For example, a story broadcast on the NBC Nightly News focused on a woman, apparently a participant in an…

Ampyra is marketed as the only multiple sclerosis (MS) drug that is designed to increase an MS patient’s walking speed. Clinical studies show that patients who use the drug walk as much as 20 percent faster. Ampyra improved my speed, several years ago, when I was on…

To scoot or not to scoot? Is is better to drag your legs around for as long as you can, or to give in and get yourself a set of electric wheels? That decision prompted the following vent on a multiple sclerosis Facebook group recently: “I’m just…

For most of the 36 years since I was diagnosed with multiple sclerosis I’ve not been bothered by pain. Just lucky, I guess. Until last month. Suddenly, I’ve developed pain in both hips and I don’t know why. The pain is most intense when I first put my feet on…

There won’t be a lot of my words in this column but there will be lot of pictures. The column is devoted to some very personal multiple sclerosis art: Tattoos. Most of these “tats” contain an orange ribbon, the symbol for MS awareness. Some, as you’ll see, are a…

Sooner or later we’re all going to die. We may not want to think about it, but it’s important that we do, especially those of us with a chronic disease such as multiple sclerosis. Though we don’t have a choice about dying, we can have a…

Alexa, Amazon’s little voice-activated information box, has just received a multiple sclerosis infusion. As part of MS Awareness Month, fifty facts about MS have been loaded into Alexa’s memory. If a user says “Alexa, start MS Awareness” the system will respond with a random MS fact. (And a short…

One of my favorite movie lines appears in “Jerry Maguire.” Sports-agent Maguire is trying to convince one of his football-player clients to stay with him and the client keeps insisting: “Show me the money.” I got to thinking of that line the other evening, while reading a Facebook post…

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 project called Real World Evidence Data, or RWE, is working outside of the…

A few weeks ago I wrote a column titled, “Why Can’t Some MS Docs Communicate With Their Patients?” It’s very unlikely that two doctors from the Cleveland Clinic — Mikkael A. Sekeres and Timothy D. Gilligan — read that column. But they, too, have written a piece about a…

You probably talk about multiple sclerosis (MS) symptoms, drugs and therapies when you meet with your neurologist, but I’ll bet that most people don’t talk very much about working. Being able to work, and continuing to hold down a job, is important. I see concerns about this all…

Earlier this month Bioness announced that the U.S. Food and Drug Administration had cleared its new “L300 Go” functional electronic stimulator (FES). It’s an upgrade of the original “L300” that I’ve been using for more than five years. Without the “L300” strapped to my left leg…

One of the most troubling symptoms of multiple sclerosis, especially for those of us who are still working, is “brain fog” — not being able to concentrate … not feeling “sharp” when working on a task or solving problems. So I was interested to read about a new…

It’s a question that nearly every MS patient faces. When do I tell my children about my multiple sclerosis, and what’s the best way to do it? In early January I wrote a column about sharing an MS diagnosis. It was prompted by a reader who had told…

A lot of factors go into our decisions when we select the drug we’re going to use to fight our multiple sclerosis. How well will it work? What are the possible side effects and how serious could they be? How will using the drug (taking a pill, giving myself a…

There is some good news about stem cell therapy. A just-published study concludes that one form of human stem cell therapy is more effective at treating multiple sclerosis than the best of the MS medications being used currently. The not-so-good news is that approval of this…

Browsing through some multiple sclerosis Facebook groups the other day I was reminded of the line from the 1967 movie Cool Hand Luke: “What we have here is a failure to communicate.” These posts jumped out at me: So when my neuro says he wants me to…

Back in September I told you about Cheryl Hile. Cheryl is a young woman with MS whose goal is to become the first person with MS to run in seven marathons on seven continents. In September she had just completed her first marathon, in Cape Town,…

You may not have heard this song, but I bet its lyrics will strike a chord. I cannot feel my body. I cannot feel my face. My legs are pins and needles and my mind is a disgrace. I see in double…

Uh oh! My cat, T.J., is under my feet trying to nibble my ankles as I stumble toward the bathroom in the middle of the night. I know what’s about to happen. As I try not to step on T.J.’S tail, it’s already started. I’m going down. It…

About two weeks ago I wrote about my roller-coaster ride being pretty smooth since my first round of Lemtrada infusions ended in early December. Well, the loops are now looping. Month two post-infusion began with a good lab report, but also with an appearance of the up-down fatigue monster.

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 firm Spherix Global Insights shows that oral disease-modifying therapies captured a significantly higher…

Want to know what living with MS feels like? Take a ride on this bike. Those of us who have MS know that our disease has lots of symptoms. There are the legs that feel like they have 20-pound weights on them … balance that can have you…

Many MS patients are in the hunt for multiple sclerosis clinical trials for which they can volunteer. But those trials are not always easy to find. On the other hand, researchers complain it also can be difficult to find trial subjects. I was lucky. Back in…

I don’t think this will surprise you. Multiple sclerosis drugs, some of the most expensive drugs there are, are getting even more expensive. Drug industry analyst Eric Schmidt, quoted in the Boston Business Journal, reported that Biogen began the new year by upping the price of Tecfidera,…

It’s been a month since I completed my first round of Lemtrada infusions, so it’s time to bring everyone up to date on how things are going. I was told to expect a roller coaster of side effects. I’m pleased to say that, at least so far, it’s…

An MS patient who reads my column sent a personal message last week. It began: “Sorry about the secrecy. I’m in the closet! Seriously, I haven’t told many people about my RRMS diagnosis, for many reasons. I really don’t want my kids knowing. … I want to spare them that…