News, info and tips for living with multiple sclerosis

Help making tough disability disclosure decisions

Two people at a desk

Telling your family and friends you have a disability can be tough. Telling your employer can be much tougher. When it comes to disclosing their disability, or requesting an accommodation, many people with multiple sclerosis (MS) worry that they’re damned if they do, but might be damned if they don’t. I’ve seen this problem from both sides. When I was first diagnosed with MS, I was working in the news…Continue Reading

A choice of shot or infusion for Ocrevus users

ocrevus zunovo vial

A 10-minute injection or a two-hour infusion? Which would you prefer to treat your multiple sclerosis (MS)? That choice is now available, following the U.S. Food and Drug Administration’s approval of Ocrevus Zunovo in mid-September. The treatment combines Genentech’s very popular Ocrevus with ocrelizumab with a drug delivery system called Enhanze. Ocrevus, according to Genentech, has been used to treat more than 350,000 people with MS (PwMS) since it was…Continue Reading

Can this CAR-T therapy help people with MS?

Woman with fingers crossed hoping for CART-T MS therapy success.

My fingers are crossed. Again. IMPT-514, an experimental cell therapy produced by ImmPACT Bio, has been approved by the US Food and Drug Administration (FDA) for phase 1 multiple sclerosis (MS) trials. I hope this treatment might be the next big thing for people with MS, but I know from experience that’s far from certain. IMPT-514 is a bispecific chimeric antigen receptor T-cell (CAR-T) therapy, designed to ease MS symptoms…Continue Reading

Checking in with marathon MS runner Cheryl Hile

Cheryl Hile with other runners at RAMMS Mini-Event

Cheryl Hile is hard to catch up with. Hile is a marathon runner. When I first interviewed her, nearly eight years ago, she had just finished running a marathon in Cape Town, South Africa. It was the first race in her goal to run a marathon on each of the seven continents in the following 12 months. Goal accomplished! Hile followed that race with marathons in Buenos Aires, Honolulu, Antarctica,…Continue Reading

Does modafinil help when MS makes me tired?

Tired man head on desk.

The author describes his struggles with fatigue, cognitive fog, and stress exacerbated by multiple sclerosis (MS) and his wife’s recent back surgery. He juggles various caregiving tasks, while battling severe fatigue. He discusses mixed results of the medication modafinil, used to alleviate MS fatigue, noting personal experiences and varying research findings on its effectiveness.

COVID-19 shouldn’t be forgotten

COVID-19 vaccine vials

It’s been steamy 100 degrees (38c) in the Washington, DC area the past four days and most people are probably thinking about cooling, not COVID-19. But the SARS-CoV-2 virus appears to be on the upswing again and people with multiple sclerosis (MS) shouldn’t ignore it. The US Centers for Disease Control reports emergency room visits for treatment of virus symptoms were rising an average of about 23% a week at…Continue Reading

Can a UTI be prevented by a vaccine?

Symbols of man and woman in pose possibly caused by a UTI.

Urinary track infections (UTIs) are common among people with multiple sclerosis (MS). I’ve been lucky to have had only 1 or 2 over the 4 decades I’ve lived with MS, but many others are not as fortunate. According to the Urinary Care Foundation, about 10 out of 25 women and 3 out of 25 men will experience a UTI in their lifetime. A review of a decade of journal articles,…Continue Reading

Is it time to get a mobility scooter?

Mobility scooter with dog in basket

“When is the right time to get a mobility scooter?” It’s a question I often see as I browse social media sites frequented by people with multiple sclerosis (PwMS). Sometimes the person is asking about a cane, a walker, or a foot brace, but the concerns are the same: will it really help me, is it going to make me look too disabled and, sometimes, can I afford it? My…Continue Reading

Should MS put the brakes on your driving?

Driving accident

I’m back in Maryland after driving up from Florida. The drive is a little over 1,000 miles and usually takes 16 to 18 hours, which I spread over 2 days. This year, that second day was filled with rain and 18-wheelers – a tough, tiring drive, requiring good concentration and driving skills. I’ve made that drive twice a year for the past 6, even though I’ve lived with multiple sclerosis…Continue Reading

Age caps for clinical trials should be removed

Closed road barrier symbolizes trial limits

I recently saw a request for clinical trial volunteers for a medication that might reduce my multiple sclerosis fatigue. “That’s great,” I thought. Fatigue is one of my worst MS symptoms. I’ve lived with it for decades and the Provigil (modafinil) that I’ve been using doesn’t help much anymore. This trial seemed like a natural for me. But I didn’t have to read the participant requirements very far to reach…Continue Reading