August 9, 2019 Columns by Ed Tobias 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…
August 6, 2019 Columns by Ed Tobias Trying to Stay Cool in a Heat Wave? A Fan Might Not Always Be the Best Option 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…
August 5, 2019 Columns by Ed Tobias MS News That Caught My Eye Last Week: 3D and Early MRIs, Memory Training, Ponesimod Trial 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…
August 2, 2019 Columns by Ed Tobias 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…
July 30, 2019 Columns by Ed Tobias 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…
July 29, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Chronic Itching, Standing Therapy, Gut Microbes 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…
July 26, 2019 Columns by Ed Tobias 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…
July 23, 2019 Columns by Ed Tobias 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…
July 22, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Ibudilast Trial for Inactive SPMS, PPMS Brain Cells in Space, MS and Cancer Risk 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),…
July 19, 2019 Columns by Ed Tobias 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…
July 16, 2019 Columns by Ed Tobias Some Doctors Can See the Cost of Your MS Meds, but Will They Look? 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,…
July 15, 2019 Columns by Ed Tobias 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…
July 9, 2019 Columns by Ed Tobias 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…
July 8, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Botox for Kids, Kids’ Healthcare Needs, Mavenclad, MS Fatigue Diet 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…
June 28, 2019 Columns by Ed Tobias 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…
June 25, 2019 Columns by Ed Tobias What’s Your Doctor Writing About You? Ask to Read the Notes 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…
June 24, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Plant Medication Trial, B-cell Depletion Study, MS App Award, DMTs’ Cancer Risk 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…
June 21, 2019 Columns by Ed Tobias 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…
June 18, 2019 Columns by Ed Tobias 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.
June 17, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: DMT Strategy Study, MS and Genetic Mutations, MS Art Project, AI Helps Neuros Read MRIs 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…
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