News, info and tips for living with multiple sclerosis

A pain in the hip is an MS pain in the neck

Lightning bolt to describe my MS leg pain

It was 3:20 in the morning when my leg jolted me awake, zinging with pain. It ran down my shin and across the top of my foot. The leg then gave a spastic jerk, bending at the knee and rapidly pulling up toward my chest. Then it slowly lowered, but the pain continued for several more minutes. Repositioning my legs combined with mentally trying to relax finally ended the episode,…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

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

Three tools to help you choose the right MS treatment

Choosing the best disease-modifying therapy (DMT) to treat your MS can be a tough decision.  When I was diagnosed with MS way back in 1980, it was easy. There were no DMTs to choose from. The first three — Avonex (interferon beta-1a), Betaseron (interferon beta-1b), and Copaxone (glatiramer acetate injection) — weren’t approved in the U.S. until the early-to-mid 1990s. Today, there are more than 20 MS treatments on the…Continue Reading

Who’s in Charge, You or Your Neurologist?

To be in charge be a boss

Is treating multiple sclerosis only about being treated with a medication? At least one neurologist thinks so, and probably more. The other day, posting in an MS Facebook group, a woman named Debbie wrote about her first visit with a new neurologist: “He asked if I was on a DMD [disease-modifying therapy] and I told him not anymore. I’ve had bad experiences. He told me that he wouldn’t treat me…Continue Reading

This Tool Can Help You Choose an MS Treatment

MS treatment choice

It’s not easy choosing a MS treatment. There are shots and pills and intravenous infusions. The National Multiple Sclerosis Society lists more than 20 disease-modifying therapies (DMTs) on its website. Some, such as Lemtrada (alemtuzumab), Ocrevus (ocrelizumab), and Tysabri (natalizumab), have proven to be effective at slowing the progression of MS. Others, less so. All DMTs have potential side effects, some more than others. So how do you know which…Continue Reading

The DMT Tool Could Help You Chose an MS Treatment

DMT tool helps decisions

Sometimes it seems as if people with MS are asked to flip a coin to make what’s arguably the most important decision they make about their treatment: which disease-modifying therapy (DMT) to use. More than 20 DMTs are approved in the U.S. and many of those are available in the rest of the world. There are pills, injections, and infusions, and their efficacy, side effects, and costs vary significantly. One…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