Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum post “Is your MS Invisible or is it obvious?” published on Feb. 15,…
Columns
Music is a spiritual experience. I love music in all of its forms. I grew up being serenaded by parents harmonizing everything from the Phi Gam fight song to Peter, Paul and Mary. After crucifying the clarinet, I played the piano until my late teens. I have fond memories of…
I hate needles. Being told I’d need to do injections was the worst news ever, second only to my diagnosis of multiple sclerosis. Sitting in the neurologist’s office with my husband, Paul, was terrifying. I was 22 and newly diagnosed with…
FDA Approves Bafiertam, Tecfidera Bioequivalent, for Relapsing MS This is the second disease-modifying therapy (DMT) OK’d by the FDA in the past few months. Bafiertam is a delayed-release pill that’s similar to Tecfidera, but it’s said that it has fewer side effects. Unfortunately, its manufacturer hasn’t yet made it…
How to Release Fear
I just turned 42, and though I am wiser and stronger and more independent than I was a few decades ago, not everything is coming up roses. Some days, I feel weak and helpless. Other days, I’m overwhelmed. And that’s just part and parcel of life for every human being…
Putting Down the Ritz
My stomach is grumbling. I’ve just had the worst weekend ever. And that includes when I had my first sclerosis and smashed my shoulder to pieces on a tennis court. I mentioned last week that I didn’t want to write about C. diff., but this appalling infectious bacteria…
I love it when a multiple sclerosis treatment works well for someone. It doesn’t matter if that treatment is a medication, a form of physical therapy, or a diet. Good news is good news. So, when I saw this post on the Lemtrada for MS Treatment Facebook group, I…
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum post, “Life Is Better with a Local MS Nurse?” published on August 24, 2019.
I lie on my stomach in a Downward Dog fail. I am doing yoga, or something like it. I open my eyes. I spy a golden retriever tumbleweed float across the travertine floor. I feel my body flinch. It knows how much I want to get up and clean. It…
Bookmark this page! Why? Because in this column, I’ll give you three techniques to help manage your anxiety. Anxiety and stress are unhelpful for anyone’s mind or body, particularly with a chronic illness like multiple sclerosis. Feeling anxious or stressed is our brain’s mechanism to prepare the body…
New Nanosensor May Help to Diagnose MS at Early Stages My neurologist likes to say that “brain is time.” The sooner MS is treated the more time you can buy before the brain begins to deteriorate and MS symptoms appear. Being able to diagnose MS sooner means earlier treatment.
Keeping It All in the Family
I’ve never done this before, but I’m dictating this column to my wife. She has many attributes, among them being trained as a secretary many years ago. We went to the same further-education college when we were both in our late teens, but never met while there. I think she…
I canceled my April blood draw. The protocol for Lemtrada (alemtuzumab) requires lab work each month because the treatment can have serious side effects. But I spoke with my neurologist and we decided that I could skip it. Blame it on COVID-19. My legs are stiffer than they were two…
Need to Know: CAM Options for MS
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum post, “Are you using vitamin supplements?” published on October 17, 2019. Share your concerns,…
Staying active can help you to manage multiple sclerosis (MS) by helping to reduce the severity and frequency of many symptoms. For example, fatigue is my worst symptom and my narcolepsy doesn’t make it any better, but a regular workout routine has reduced my exhaustion. I love the gym,…
What will the future look like after this coronavirus craziness is over? One thing is certain: The world can’t go back to being “normal.” This time in isolation has raised many issues and broken down so many barriers. Only now do…
News that Caught My Eye Last Week: Ocrevus Infusion Time, Monocytes as a Therapy Target, MS and Work
Shorter Ocrevus Infusion Time Up for Approval in US and Europe One of the drawbacks to infusion therapies is the time a patient spends in a recliner receiving the medication. For Ocrevus (ocrelizumab), nearly half a day is required for the infusion itself. Add on pre-infusion care and post-infusion…
So far, this week has been horrible, but I’ll give that a brief mention later. The truth ain’t pretty, nor do I think it always makes good copy. Unless I go for the trite “However bad it is out there, it’s even worse in my bedroom!” I’m in the perfect…
COVID-19, Joey Cocker, and Me
It’s comforting to have this guy, with his floppy ears, stretched out next to me as I sit here writing. I don’t know why, but the fact that Joey, who is really my wife Laura’s cocker spaniel, has chosen to nap next to me is special. I’m not usually a…
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum post “An Open Letter to a Newly Diagnosed Patient” and this column by John…
I give freely of my heart and wear it proudly on my sleeve. Those who know me would say it waves. I care deeply for my family, friends, and colleagues. I derive immense joy in my volunteer work with rescue animals. Be it Walk MS, animal welfare, or a…
Well, this is super weird. Being told to stay home and leave our houses only for food, medication, or exercise is bizarre for those of us in England. It’s starting to take a toll on my mental health. The other day, I stood in line at…
Fampyra, Aid for Walking, Favored for Inclusion in NHS Scotland I used Ampyra, as Fampyra is known in the U.S., for about a year. It improved my walking a little, but I had to give it up due to cost. It’s been available in the States for a decade,…
I have a new personal hero. His name is Ralph Wendorf. We probably don’t have much in common. He’s not even an MS patient! I’ve never met him, and I likely never will. He lives across the country from me, in New Mexico, but thanks to a local broadcast that…
I knew a urinary tract infection (UTI) had come a visiting again. I’m now attuned to the slightest hint, like that vague burning after weeing. Indeed, it doesn’t have to burn; it could merely be the faintest tinkle — which is rather apt! This time, it went on to further…
Are people with MS more susceptible than the average person to the coronavirus that causes COVID-19? And if COVID-19 attacks them, what’s the likely course of their illness? What about COVID-19 and disease-modifying therapies? Doctors from around the world are collecting information right now to try to answer these…
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum post, “Neurologists now holding telemedicine/virtual appointments” from March 24, 2020. Post your concerns,…
Manifesting Change with SPMS
The state of our world lies heavy on my shoulders. I worry about and miss my family. Our geographical distance, although unchanged, seems to have grown exponentially. Is everyone so far, or am I so very confined? I understand how a prisoner in solitary confinement finds his own perception…
“I can’t move my head,” I thought. It was 5 a.m. on April 1, and the realization of my full bladder prompted my wakening. But I soon realized I had a more significant issue that only became apparent when I tried to get up and couldn’t. What on…
New Database to Compile COVID-19 Data About People with MS and Related Diseases There are databases in the U.K. and other parts of Europe for tracking people with MS who have tested positive for COVID-19. This one is aimed at people in North America. This site will join the…