The MS Wire - A Column by Ed Tobias

Phase 3 Trial of Sativex, Cannabis Extract Treatment for MS Spasticity, Opens in US This is a major step toward making a clinically tested, cannabis-based medication available in the U.S. I’ve always thought that medications containing a THC/CBD combination are useful to lessen some MS symptoms, but the lack…

MD1003 Fails to Prevent Disability Progression in Progressive MS Patients, Trial Shows This is discouraging news for people taking high-dose biotin, many who have been buying it over the counter. Not only do these researchers report that taking 100 mg of biotin (MD1003) three times a day failed to…

Is the United States a step closer to approving a form of stem cell transplantation as a treatment for multiple sclerosis? I believe it may be. That’s because the National Multiple Sclerosis Society (NMSS) has slightly changed its view of autologous hematopoietic stem cell transplantation, or aHSCT. aHSCT involves…

Majority of MS Patients in US Report Mistreatment by Caregivers in Survey This is a serious issue, but it’s not as pervasive as this headline makes it appear. The survey looked only at the treatment of people with advanced MS, the 30% of people with MS who need help…

Editor’s note: Previously, this piece stated that Dr. Ide Smets theorized a transition to telemedicine as the standard of care could cause decreased life expectancy in the U.K. of up to 30 years. The piece has been corrected to state that such a change could result in a decreased life…

Mayzent Approved for Active SPMS Patients in England and Wales This is great news for people with MS in England and Wales. Mayzent (siponimod) is a needed weapon in the MS battle. It is approved for use in active cases of secondary progressive MS (SPMS), while most other disease-modifying…

My multiple sclerosis (MS) was diagnosed 40 years ago in August. I never kept my MS a secret, but I didn’t go around advertising it, either. I’ll bet, for the first 20 years or so, very few people at work knew I lived with the disease. When my MS stuck,…

Gilenya and Tecfidera Similarly Effective at Treating RRMS, Real-world Study Says Gilenya and Tecfidera are both oral disease-modifying therapies. Both meds attempt to limit the inflammatory action of the immune system. Both now have generic versions. And as this story reports, neither appears to have a leg up over…

Many people with multiple sclerosis (MS) get tattoos. Often it’s a way to deliver a statement about MS to the world, or perhaps it’s a personal message to the person sporting it. But a new report cautions that too much ink might create a health issue for some folks.

MS Patients Should Avoid ‘Silver’ Tooth Fillings Due to Mercury, FDA Advises Concerns about the possible danger of amalgam dental fillings have been floated for years. Several European countries already have banned their use in certain cases. Now, regulators in the U.S. have taken a small step in that…

For years, some people have warned of a possible connection between multiple sclerosis (MS) and the amalgam fillings many of us have in our teeth. The concern has been that these fillings contain mercury, which can be toxic, especially if they are removed. In large part, these concerns have…

MS Prevalence at Over 2.8 Million Worldwide, Update to Atlas Reports With almost 3 million of us around the world, we’re not really rare, but we’re rare enough that our MS is still a puzzle to many. People seem to know what muscular dystrophy is (probably because of the…

We’re moving and I’m stressed. That’s redundant, I know, as moving is simply stress on wheels — which isn’t good for someone with MS. Studies have shown a link between stressful life events and MS exacerbations, known as flares. Researchers, if you’re reading this, please keep a watch on…

National MS Society Launches Survey to Assess Economic Impact of MS We know that managing MS is expensive. It can cost us money out of our pockets and also limit our ability to earn that money. A small survey about this was the subject of my “MS Wire”…

Multiple sclerosis (MS) is expensive. Even with good insurance, those of us living in a country without universal healthcare have significant out-of-pocket costs for our treatments and medications. Some of these costs may not be covered at all. MS can put us into some serious debt, and it happens to…

COVID-19 Pandemic Had Minimal Emotional Impact in Progressive MS Patients, Survey Finds I beg to differ. I have secondary progressive MS, and COVID-19 has bummed me out. I haven’t been in an exercise room since May. My wife and I haven’t had a meal in a restaurant since late…

Labor Day has come and gone here in the U.S. Now, flu season has arrived in the Northern Hemisphere. This isn’t the novel coronavirus we’ve been fighting all year. It’s the regular seasonal flu virus that’s knocking on our door again. Each year, some people with multiple sclerosis (MS)…

You’re stressed, and Halo may know it. Halo is a new Amazon service the company says can judge how stressed you are, in part by the tone of your voice. The service uses a wristband that connects to a mobile app. A small sensor in the band monitors temperature, heart…

Paramagnetic Rim Lesions Showing Promise as Diagnostic Marker of MS About a year ago, researchers at the U.S. National Institutes of Health reported that the presence of chronic active lesions in the brain may provide a clue as to how quickly multiple sclerosis symptoms will progress. They called them…

The U.S. Justice Department has the manufacturer of Copaxone (glatiramer acetate injection) in its crosshairs, and the outcome could have a much greater reach. It appears the case could directly affect the copay help many of us receive for our medications and the patient services some drug companies provide.

FDA Approves Kesimpta, B-cell Targeting Therapy for Relapsing MS The U.S. Food and Drug Administration’s approval of Kesimpta (ofatumumab) this month is a pretty big deal. Kesimpta is a once-a-month injectable disease-modifying therapy. There’s nothing else like it, because Kesimpta targets B-cells in the immune system. Until now, only…

I’ve been walking with the Bioness L300 Go for about eight months, so it’s time to update everyone on how things are going. The L300 Go is a functional electrical stimulator (FES) that helps counter my foot drop. MS has damaged the nerve that carries the message telling my…

Ofatumumab Seen as Superior to Aubagio at Lowering Relapse Rates in Phase 3 Trials Ofatumumab is a cancer medication that’s awaiting approval by the U.S. Food and Drug Administration and the European Medicines Agency to treat MS patients. It’s delivered by injection once a month and aims to reduce…

The idea doesn’t seem very appealing to me, but a company is seeking approval from the U.S. Food and Drug Administration (FDA) for a product that might help people with MS walk better by mildly stimulating the tongue. The portable neuromodulation stimulator (PoNS) is a flat…

Smoking and Epstein-Barr Virus Combine to Raise MS Risk, Study Says A number of studies over several years have demonstrated a likely link between the Epstein-Barr virus and MS. Of course, there’s no question about the health risks of smoking. Put the two together, and it looks like double…

In early July, I wrote a column about Disability Pride Month. It’s not for me, I said. I questioned the word “pride” and asked whether we need a special month to advocate for a more inclusive world. Several people commented on that column — some supported my thoughts, while…

Order Seen in Motor Skills Affected by MS, With Walking Taking First Hit Read this headline carefully. It reports that walking takes the “first hit,” but that doesn’t mean it’s the first MS symptom people experience. My first symptoms involved vision, fatigue, and hand strength. But true to the…

Like others these days, I’m worried about COVID-19. In fact, I’m probably more worried than some. I’m old, I have MS, and I’ve been treated with the disease-modifying therapy Lemtrada (alemtuzumab) — a trifecta of potential trouble. Lemtrada suppresses part of the immune system. It’s one of the…

Ketamine May Help Treat MS-related Fatigue, Small Pilot Trial Suggests I’m tired — I mean really bushed. Today, despite my daily dose of modafinil, I have to sit and think, “What was I starting to do?” before doing it. (I had to look at a list on my phone…

Do you ever wake up in the middle of the night thinking strange thoughts about your MS and your dog? I did the other night. I’ve written about Joey, my cocker spaniel, a couple of times. For example, there was a column about the adventure of taking him for…