News, info and tips for living with multiple sclerosis

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

Falling with MS: It’s not if, but when

Picture illustrating falling with MS

Have you fallen recently? I’ll bet you have A web-based survey of 965 adults with multiple sclerosis, published in the March 2024 issue of the American Journal of Physical Medicine and Rehabilitation, reports 56% said they had fallen in the previous 6 months. Sixty-eight percent of those falls were in their home. A third of the people were hurt. I’m surprised the numbers aren’t higher. Those falls were the result…Continue Reading

A little more hope for restoring myelin

Nerve cells, have myelin coating

Finding a treatment that can restore myelin is my holy grail for multiple sclerosis researchers. Will a neurostimulator designed by SetPoint Medical someday be the treatment for which I’ve been searching? MS has been attacking my myelin since I was diagnosed 43 years ago, probably longer, stripping away insulation from axons and disrupting the signals that travel along my nerve fibers. That, in turn, has disrupted my walking, my thinking,…Continue Reading