The MS Wire

News, info and tips for living with multiple sclerosis

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Really tired? Most People With MS Are

really tired

Are you tired? Really tired? Me, too. Most of us with multiple sclerosis are. How many really tired people is most? A small new study of 44 people with one of the progressive forms of MS found the answer is a little over 86%. (I’m surprised the number isn’t higher.) Those people described their fatigue as “tired,” “exhausted,” “wiped out” and having “little or no energy.” Half of patients reported…Continue Reading

Zeposia Becomes Latest Weapon in the MS Battle

Zeposia fights MS

I have some new MS treatments to tell you about. The first is Zeposia (ozanimod) . By my unofficial count, it’s the 19th disease-modifying therapy to become available in the U.S. to treat multiple sclerosis. The Food and Drug Administration approved Zeposia in late March. Pharmaceutical companies usually rush to put their newly approved medications in doctors’ offices. But this time, with COVID-19 raging, Bristol-Myers Squibb wasn’t in a hurry.…Continue Reading

Is This an MS Flare I’m Having?

having an MS flare?

Sitting down to write this, it’s hard for me to concentrate. I’d planned to write about some new MS mobile apps, but I can’t get my brain to focus on the task. I’ve been bragging about how I’ve been feeling sharper and better able to concentrate over the past several months, but not today. Distractions are more distracting than usual. For two days, my legs have felt weaker than usual…Continue Reading

My Laptop Needed a Weekend

Giving my laptop a weekend

My favorite line in the “Downton Abbey” TV series, uttered by the dowager played by Maggie Smith, is “What’s a weekend?” When you’re retired, if you’re working as a freelancer, or if like me you’re doing both, it’s easy to forget what day of the week it is. It’s also easy to work seven days a week. The stay-at-home mandates of COVID-19 have extended this problem to many people who…Continue Reading

Epstein-Barr and MS: Another Link Reported

Epstein-Barr and MS link

More support has been added to the belief that a connection exists between the Epstein-Barr virus and MS. Epstein-Barr is one of the most common viruses, and most people become infected with it at some point in their lives. Frequently, it appears in childhood as infectious mononucleosis, or mono. In a very young child, its symptoms may be minor or unnoticeable. Over the years, many studies have looked at a…Continue Reading

My MS Routine Changes – Blame it on COVID-19

N95mask. Blame it on covid-19

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 months ago. My walking is slower. I’ve postponed my semiannual neurologist visit. Blame it on COVID-19. But my decisions have…Continue Reading

Covid-19, My MS and Joey Cocker

It’s comforting to have this guy, with his floppy ears, stretched out next to me as I sit here writing about my MS. 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 softy for this kind of thing and Joey can be a real pain in the neck when…Continue Reading

MS, COVID-19 and Disease-Modifying Treatments

covid-19

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 treatments? Doctors from around the world are collecting information right now to try to answer these questions. While it’s still early to reach any conclusions, I’ve been monitoring the internet and listening to Zoom meetings held by…Continue Reading

My Lemtrada Journey: Two Years Post Round 2

My Lemtrada journey

Happy Lemtrada anniversary to me! It’s been two years since I completed my second round of Lemtrada (alemtuzumab) infusions, and I’m happy to say that the results have been good. Not everyone’s experience with Lemtrada will mirror mine, but I don’t think I’m much different than most. My brain MRI hasn’t shown any new, enhanced, or active lesions since before my first treatment, although that had been stable for several…Continue Reading

Coronavirus Means Virtual Visits for Neuros and Patients

virtual visits

Dr. Aaron Boster assessed the gait of his multiple sclerosis patient, who walked forward and back. Earlier, he had checked the patient’s seventh cranial nerve by having him close his eyes tightly and smile. Then, Boster checked the ninth, 10th, and 12th cranial nerves by having him stick out his tongue and wiggle it back and forth. A motor exam followed, which included flopping the hands palm-up and palm-down, and…Continue Reading