Author Archives: Ed Tobias

MS News that Caught My Eye Last Week: Solution for Lemtrada Complications, CBD Infusions, Vaccines and MS, Music and Exercise

Autoimmune Complications Associated with Lemtrada Solved Using Anti-CD20 Therapies, Case Studies Suggest One of the concerns about the disease-modifying therapy (DMT) Lemtrada (alemtuzumab) is that it may raise the patient’s risk of developing a secondary autoimmune disease within seven years post-treatment. This small study suggests that the abnormal proliferation…

Using Marijuana and Having Surgery? Tell Your Anesthesiologist

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…

Using the Floodlight App to Track My MS

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…

Getting Back in the Water with My MS

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:…

Why Am I Not Bitter About My MS?

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 Are Getting Harder to Treat

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…

This Is Me, and This Is How I Live with My MS

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…

MS News that Caught My Eye Last Week: Gadolinium Study, Breath Test for MS Diagnosis, CBD Treatment Trial, Potential Remyelination Therapy

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…

CBD Oil: Panacea or Placebo?

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…

Can Legos Help to Ease Some MS Symptoms?

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,…

Scooters, Walkers, and Canes Should Trump Ego

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…

Some Neuros Make DMT Choice Harder than It Should Be

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.

Tony Awards ‘Cain’t Say No’ to Ali Stroker

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…

Making Invisible Patients Visible

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…

My MS Has Been No Sweat. Has Yours, Too?

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.

Walmart Is Putting Quality of Employee MRIs Before Cost

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…

To Handle MS, Sometimes We Need a Little Attitude

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…

Why I Take My MS to the Gym

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…

Dancing Doodle

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