The MS Wire - A Column by Ed Tobias

If you’re using marijuana and have surgery scheduled, take heed. In Colorado, where medical marijuana was legalized in 2000 and recreational use in 2012, medical personnel are discovering that weed may complicate the surgical process. The concern, according to an article in Kaiser Health News, is that marijuana…

July was unusually hot in much of the Northern Hemisphere. So, pull out your electric fan and use it to help your multiple sclerosis (MS) beat that heat and humidity, right? Maybe not. A study recently published in the Annals of Internal Medicine reports that using a fan to…

3D Imaging of Brain Lesions May Spot Those Most Likely to Heal, Guiding Treatment These scientists are working to create a new diagnostic tool that would allow doctors to use an MRI to look at brain lesions in 3D. This would allow them to see the shape and surface…

Over the past several weeks, I’ve been using an app called Floodlight to track my ability to live with my multiple sclerosis (MS). It measures things such as my balance, finger dexterity, walking speed, and cognitive ability. It even knows if I’m keeping myself shuttered in my apartment or…

After a week of temperatures at 95 degrees or more making it too hot to swim, today was comfortable enough for me to get back into our condo’s pool. The water temperature was perfect and cool enough to keep me refreshed. I had the best workout I’ve had this season:…

Neuronal Circuit Likely Behind Chronic Itch in MS and Other Diseases Identified I often read posts on multiple sclerosis social media groups complaining about chronic itching. This mouse study may have found a reason for that symptom. The researchers hope that finding the cause will eventually lead to a…

Living with multiple sclerosis (MS) is a process of loss — of mobility, brain function, and independence. We can lose relationships and jobs. For most of us, these losses are forever. A woman who commented today on a column I wrote a few weeks ago said that she is…

Urinary tract infections (UTIs) are a problem for a significant number of people with multiple sclerosis (MS). As many as three in 10 may wind up needing treatment for one. So, I was concerned when I read a New York Times article reporting that UTIs are becoming harder…

Phase 3 Trial of Ibudilast Planned for SPMS Patients with Inactive Disease, MediciNova Says Though medications are approved in the U.S. to treat primary progressive multiple sclerosis and active secondary progressive MS (SPMS), no disease-modifying treatments are approved to treat the nonactive form of SPMS. This trial aims…

Have you ever read something and thought, “This is me, this is my MS”? It happened to me today as I read a post by Rachel Horne on the BartsMS blog. Horne writes about how some of us adapt to our MS diagnosis better, or at least differently, than…

Does your doctor consider what you’ll have to pay when prescribing your medications? A few months ago, I wrote that some people are skipping doses of their meds because they can’t afford their out-of-pocket costs. In that column, one of the suggested solutions was to talk to your doctor…

Study Examines Gadolinium Deposits in MS Patients’ Brains, But Still Can’t Determine Relationship with Disease Severity Here’s some new information about gadodiamide, a contrast dye that is injected during some MRIs. The study confirms that gadolinium, the substance on which gadodiamide is based, builds up in the brain, but…

Last night in bed, my calf muscles started cramping. Again. Usually, it’s just my left leg, but last night it was both. The pain wouldn’t ease with my usual stretching routine so I reached for my little bottle of cannabidiol (CBD) oil. I’ve been experimenting with CBD oil on and…

FDA Approves Botox to Treat Upper Limb Spasticity in Children Aged 2 to 17 Botox injections have been approved to treat spasticity and bladder problems in adults with multiple sclerosis (MS) for years. It’s encouraging to see pediatric-onset MS receiving more attention and approval for medications. As MS is…

Legos, it seems, are more than just a kids’ toy. People with some neurological conditions, including multiple sclerosis (MS), are using those little, colored building blocks to build better lives for themselves. An article in the latest issue of Brain & Life uses Kathleen Jordan as one example. Jordan,…

I’ve been living with MS for nearly 39 years and I’ve never seen the notes my neurologist has written during my office visits. My neuro did hand me a thick folder of notes several years ago. It had material dating back to my diagnosis in 1980, but when we…

Cyxone Launches Phase 1 Trial Assessing T20K for MS This trial caught my eye because even though it’s a small, early trial, T20K is a medication derived from a plant. Animal studies have shown that the treatment can inhibit cytokines, substances that mediate inflammation. Cyxone launched the first-in-human Phase…

I’ve used an electric scooter for nearly 20 years. At first, I only used it when I knew I’d be walking a lot. Now, it’s every day. I used a cane for several years before the scooter. I resisted using both, however, and I’ll bet that many of you who…

More than 15 disease-modifying therapies (DMTs) are available in most high-income countries to treat multiple sclerosis (MS). DMTs come in the form of injectables, infusions, and pills. Some are new, others have been around for more than 20 years. Some have a greater possibility of serious side effects than others. Some DMTs are highly effective at slowing or stopping disease progression; others, not so much. It's a difficult choice to make. So, why are some neurologists making it harder? These doctors are handing their patients a medication "shopping list" and telling them to pick one. I see this topic discussed regularly in social media MS groups. Recently, a woman who needs to switch DMTs wrote that her neuro gave her a "handful of (medication) brochures" and told her to go home and decide which medication she wanted. Really? DMT selection shouldn't be do-it-yourself I've been using DMTs for more than 20 years. I've been on Avonex (interferon beta-1a), Tysabri (natalizumab), Aubagio (teriflunomide), and Lemtrada (alemtuzumab). I always had the final say on which med I wanted to use, but I never had to make that decision alone without guidance from my neuro. That's the way a doctor-patient relationship should work. While the final DMT decision should always rest with the patient, your neurologist has the responsibility to use his or her knowledge of the meds and of you to guide you in your choice. Some factors that you both need to consider are: Is the disease progressing quickly or slowly? Your lifestyle: Do you work full time? Do you have a good support system and reliable transportation? If an injectable DMT is in the mix, can you handle injecting yourself monthly, three times a week, or every day? How much possible risk are you willing to accept in exchange for the potential of a better result? An additional and criticial consideration is whether you can afford the treatment. My impression is that cost is rarely thought of or talked about before most physicians prescribe a medication. I see nothing wrong with asking your doctor how much you can expect to pay out-of-pocket. (Or, for the doctor's office to ask this of your insurance company). If you feel your neurologist doesn't know all of these things about you I suggest that you be proactive and fill in any blanks. The final choice is yours With all of that knowledge, you can probably narrow down the most appropriate DMT candidates for you to three or four. Then it's time for your neuro to clearly explain why those are the best choices and to review the pros and cons of each. Then, and only then, it's time for you to make the final choice. And your decision might be not to use any medication. That wouldn't be my choice, but it might be yours. After all, you're the one who'll be living with whatever choice you make. What has been your experience? Was your neurologist helpful when selecting a DMT or were you given "a handful of brochures" and told to do-it-yourself? How did you choose? You're invited to visit my personal blog at www.themswire.com.

DELIVER-MS Trial Recruiting RRMS Patients to Help Improve Treatment Decision-making What’s the best way to attack multiple sclerosis when it’s first diagnosed? Do you hit it hard and fast using the most effective disease-modifying therapy (DMT), or do you start with a lower efficacy DMT and slowly ramp up?…

Rather than hiding from the storm, it’s better to learn to dance in the rain, as I like to say. Ali Stroker, who plays Ado Annie in the Broadway revival of the musical “Oklahoma,” has learned to dance in a wheelchair. She was recognized this week at the Tony…

You may have felt what Bethanee Epifani Bryant has felt in a doctor’s office. I think many patients have, but most of us can’t paint the picture of our experiences that Bryant can paint. And she paints it using words. Bryant is a poet. “I sit on the…

FDA and EMA to Review Ozanimod as Possible Oral Therapy for Relapsing MS Another disease-modifying therapy (DMT) is a step closer to gaining approval for use both in the U.S. and in Europe. And that’s good news. The discouraging news, however, is that once again, the approval is being…

I worked up a little sweat when I was exercising the other day. It was just a tiny bit on my forehead, but it was something I hadn’t felt in many years. I’ve lived with MS since 1980, and before now, I can’t remember the last time I felt sweaty.

Cyxone Nears First-in-human Trial for Investigational Preventive MS Treatment T20K Multiple sclerosis can be treated but it can’t be prevented — at least not yet. But these researchers hope that a substance derived from a natural plant protein called T20K will be able to ease or even prevent MS…

Did you know that not all magnetic resonance imaging (MRI) exams are of equal quality? Walmart officials know this, and they are concerned that poor exams given to their employees are costing the company money. Because people with multiple sclerosis are likely to have several MRIs over the…

The other day, a young woman with multiple sclerosis (MS) shared her worry in a Facebook group that her disease would prevent her from playing with her grandchildren someday. Her concern got me thinking about how I’ve handled my MS and my grandchildren. My granddaughter is almost 5 and will…

I rode a recumbent bike for 15 minutes today. That’s a record for me, and it felt great. The bike ride was part of an overall exercise routine that I’ve set up for myself at the gym. It mirrors what I was doing about 15 years ago, when I was…

I’ve met Humpty Dumpty, and he is me. I made that discovery the other night when I had a bad fall. It wasn’t off a wall; it was just off a chair, but it felt like I’d tumbled off Humpty’s high ledge. It shouldn’t have happened. I’ve lived with MS…

#AANAM – Biogen Offers Update on Development Plans for MS Therapies The pharma company that brought you Tysabri (natalizumab) is investigating a new process for treating multiple sclerosis. The treatment looks for something called neurofilament light chain (NfL), a potential biomarker that’s released from damaged neurons.