Author Archives: Ed Tobias

A medical website’s headline screamed, “Breakthrough Multiple Sclerosis Vaccine Shows Impressive Results In Study.” The New York Daily News joined in, highlighting a potential “breakthrough” vaccine. Other media outlets also were using similar adjectives earlier this month. Unfortunately, it’s normal media hype. I suspect some of it was was…

Clene Awaits US Patent Covering Gold Nanocrystals’ Use in Treating MS This is a different approach to MS treatment. It uses very tiny crystals to produce a chemical reaction. It is hoped that this reaction will protect neurons and help to generate myelin. So far, there have only been…

I love the car I drive, but I’ve hated going to the dealer to get my car serviced. In the four decades that I’ve lived with MS, my walking has deteriorated to the point where I use a scooter if I have to walk more than 75 feet. If I…

Public-private Partnership Will Assess Therapy Potential, Effects of CBD Have you tried using CBD to treat your MS? I have. I’d hoped it would ease my leg spasms. Some people say it helps, but neither drops under my tongue nor salve rubbed onto my legs seemed to help me.

The advice issued Tuesday by the U.S.-based National Multiple Sclerosis Society about COVID-19 vaccination couldn’t be clearer: “Get your vaccine as soon as it is available to you.” New MS Society guidelines say that the two COVID-19 vaccines currently available in the U.S., both of which use an…

Study: Past Long-term DMT Use Tapers Risk of Current MS Progression Since being diagnosed in 1980, I’ve used four disease-modifying therapies (DMTs), starting with Avonex (interferon beta-1a) in the late 1990s. I haven’t had a true flare since shortly after my Avonex treatment began. My disease has progressed, but…

The answer to whether Amazon, in partnership with a pair of financial giants, can make healthcare more accessible and less expensive for its workers is: Apparently, it can’t. About two years after rolling out a project known as Haven, the plug is being pulled. The idea had been for…

One of the key considerations when choosing a disease-modifying therapy (DMT) is how much it will disrupt your life. It’s one of several factors that need to be evaluated. Unlike shots and pills, infusion treatments can require a significant amount of time. That’s why the U.S. Federal Drug Administration’s December…

Stem Cell Therapy Shows 2-year Benefit for Progressive MS Patients in Phase 1 Trial Stem cell studies always catch my eye. This very small study involves people treated with their own bone marrow, which was collected and expanded to give it the ability to modulate the MS immune response…

Are you sitting down? I am, but I’ve been doing too much of that this year. For the past six months, I haven’t been using our community exercise room. I haven’t been able to swim. I haven’t gone outside that much. I’ve become a couch potato, and you know why:…

MS Patients Urged to Enroll in Clinical Trial Assessing Chronic Fatigue Treatments My “MS Wire” column 10 days ago reported on a study of MS fatigue treatments that compared three medications with a placebo. The study found that none of the medications were much better than the placebo.

Do you plan to get a COVID-19 vaccine? I do.  One is now available to some residents of the U.K., and approval in the U.S. of one or more likely will happen soon. Though the U.S.-based National Multiple Sclerosis Society has said only that people with MS should consider…

Review Study Examines Factors That Affect MS Patients’ Quality of Life What affects the qualify of your life as someone who lives with MS? Fatigue is at the top of my list, followed by difficulty walking. Now, COVID-19 plus gray, winter weather have added a bit of depression. So,…

I’ve been tired all day, which is nothing new, as fatigue and multiple sclerosis go hand in hand. It’s been one of my primary symptoms since I was diagnosed in 1980. To counter it, I’ve taken Provigil (modafinil) for many years. Initially, taking 100 mg in the morning helped…

Tysabri Affects Immune System Beyond Known MS Target, Study Finds Tysabri (natalizumab) slows multiple sclerosis progression by blocking some immune cells from entering the central nervous system, where they attack the myelin coating of nerves. Yet this study shows that Tysabri may also significantly reduce the number of proteins…

Smartphone Typing Patterns May Be Tool for Monitoring MS Progression, Study Finds This is an interesting concept that makes sense. Like the nine-hole peg test that some neurologists use to test finger dexterity, and like some apps that attempt to measure this, monitoring how quickly, and in what manner…

The temperature’s dropping. The wind is whipping. It’s time for my wife, Laura, and me to head south, leaving cold, uncomfortable Maryland for the welcoming warmth of southwest Florida. Or is it? Though I once swore I’d never become a snowbird, a few years ago, we spent a week on…

Neurofilament Light Levels at First MS Event Can Predict Long-term Brain Atrophy Researchers are looking at a protein that’s released into the body’s fluids when neurons become damaged. They hope it will help them predict — as far as 10 years down the road from the first indication of…

The Multiple Sclerosis International Federation (MSIF) has issued new recommendations about how people with MS should adjust their daily lives because of the coronavirus pandemic. The MSIF, a network of national MS societies from around the world, first issued COVID-19 recommendations last spring. But much has been learned…

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…