The MS Wire

News, info and tips for living with multiple sclerosis

Category: Living with MS

Disability Pride Month? Not for Me

Disability pride month

July is Disability Pride Month. Now, don’t flame me right away for writing this, but I don’t think we need a month highlighting disability pride — just like I don’t think people with MS need a month in October spotlighting rare diseases. MS is invisible but, with more than 2.3 million people carrying that diagnosis, it’s not rare. Disability Pride Month seems to have started as Disability Pride Day, which…Continue Reading

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

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

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

Is Online Coronavirus Screening Useful?

online coronavirus screening

A number of websites are currently offering online coronavirus screening. These aren’t a full-scale test. The online sites read symptoms that you enter and then use artificial intelligence to determine how likely it is that you’re positive for the virus. But there’s a bit of a problem. An investigation by a pair of reporters from STAT reveals that different websites give different responses to the same set of symptoms. For example,…Continue Reading

COVID-19 and DMTs: What’s Happening If You Have MS?

covid-19

What’s happening if you have MS and you’ve tested positive for COVID-19? How will the disease affect your disease-modifying therapies and your MS? How will the DMTs affect COVID-19? Dr. Barry Singer, (@drbarrysinger), a neurologist who directs The MS Center for Innovations in Care in St. Louis, has posed that question to his Twitter followers. And the responses that Singer has received, from around the world, from people with MS who…Continue Reading

Will MS Patients be OK with Myeliviz?

mri and myeliviz

Myeliviz is the name of a new imaging agent approved for a clinical trial in the U.S. It has the potential to make the process of diagnosing multiple sclerosis faster and tracking the disease progression easier. Myeliviz does this by providing doctors with a better picture of damaged myelin — the cause of many of our MS symptoms. The procedure is similar to that of an MRI with contrast. Myeliviz…Continue Reading

MS Isn’t Rare, it’s Invisible

MS isn't rare

Feb. 29 was Rare Disease Day. It’s a day on which those in the rare disease community attempt to raise awareness about their diseases. I don’t think MS should be included. MS isn’t rare. About 2.5 million people worldwide have multiple sclerosis. When I was working in a newsroom of about 100 people three of us had MS. And everyone seems to know someone with our disease. It is rare,…Continue Reading

Statistics Link MS and Smoking

MS and smoking

A link between people with MS and smoking has been highlighted by statistics released by the Public Health Service in the UK. The numbers are part of a group of statistics that are intended to help health commissioners and providers assess “the needs of patients with MS and the provision of health and care services,” according to the government’s website. Primary findings Nearly 106,000 people in England have MS. That’s…Continue Reading

Are You Peeing in Morse Code?

Peeing in Morse code

Are you frequently up at night for bathroom trips? When you’re outside, are you always looking for a loo? You’re not alone. A recent study confirms that the vast majority of people with multiple sclerosis are dealing with bladder problems. You probably know the symptoms: They include having to urinate frequently, incontinence, dribbling, or not being able to empty your bladder completely. Sometimes, those lower urinary tract symptoms can be…Continue Reading