MS news notes: Diagnosing PPMS, NB-4746, Neubie stimulation

Columnist Ed Tobias comments on the week's top MS news

Ed Tobias avatar

by Ed Tobias |

Share this article:

Share article via email
banner for

Welcome to “MS News Notes,” a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening:

PPMS is difficult to diagnose, report says

Most people who have multiple sclerosis start out with a diagnosis of relapsing-remitting MS, but a small number begin with a primary-progressive MS (PPMS) diagnosis. That’s when symptoms gradually worsen over time right from the start.

There are guidelines, called the McDonald criteria, that determine MS type using time of progression, MRIs, and lab tests. But as the MS News Today article “Diagnosing primary progressive MS difficult, despite guidelines” reports, it’s still a tough call to make.

The story looks at a study in the Netherlands that reviewed data from 322 people diagnosed with PPMS between 1974 and 2019. The researchers found that only 228 of them actually met the criteria for a PPMS diagnosis. According to the study, some had other health problems that may have affected the diagnosis. For more than 100 others, it was unclear whether the progression started at disease onset, meaning it’s possible they could’ve had a relapsing form of MS.

This problem doesn’t only concern PPMS. Many people with MS have told me they’re unclear about when their disease status changed from relapsing to secondary-progressive MS. That was certainly the case for me. But does it really matter what your MS is labeled — except to insurance companies that determine which treatments they’ll cover based on the diagnosis?

Recommended Reading
banner image for Ben Hofmeister's column

Multiple sclerosis makes it tough to deal with the heat of the dog days

Patient testing begins on experimental treatment for nerve damage

Clinical testing is starting for an investigational treatment that aims to block an enzyme contributing to the damage of axons, the long fibers that connect nerve cells. The study is important for people with MS because, as the article “Experimental MS therapy NB-4746 to be tested in healthy volunteers” reports, if axons are damaged, the result can be problems with senses, motor functions, and cognition — all typical MS symptoms.

In this Phase 1 clinical trial, only healthy people will be trial subjects. But Nura Bio, the company sponsoring the NB-4746 trial, expects to begin clinical trials using MS patients sometime in 2024.

An electronic device that aides physical therapy

I’m currently in the middle of twice-weekly physical therapy sessions. I have periods of it a couple times a year to loosen my stiff legs and back muscles and to improve my core strength.

As reported in “Neubie electrical stimulation device found to help in progressive MS,” using an electronic device that stimulates nerves and muscles as an add-on to physical therapy could improve strength, range of motion, and spasticity in people with MS — all things that I need. The stimulation essentially works to reeducate, or reboot, the neuromuscular system and restore it to more normal functioning.

The Neubie — which stands for “neuro-bio-electric stimulator” — is cleared by the U.S. Food and Drug Administration, but not specifically for treating people with MS. It’s made by the company Neufit.

Courtney Ellerbusch, a physical therapist in Colorado who spearheaded the effort to further test the Neubie device on MS patients, says she did it “for the individuals who face a daily reality in MS that has changed everything about their lives.”

MS hasn’t changed everything about my life over the past 40 years, but thank you for your efforts, Ms. Ellerbusch. Every little bit helps.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Elizabeth Cohen avatar

Elizabeth Cohen

ED, I WOULD BE VERY INTERESTED TO KNOW IF YOU FEEL THE SESSIONS WITH THE NEUBIE ARE HELPFUL, AND IF SO, WHAT CHANGES HAVE YOU SEEN. I AM A FAITHFUL READER OF YOUR COLUMN; ALTHOUGH I WAS ABLE TO WALK WITH THE HELP OF A ROLLATOR FOR ABOUT 20 YEARS, IN 2021 I FELL AND FRACTURED MY FEMUR. IT HAS HEALED BUT I CAN NO LONGER WALK AND MY RIGHT HAND NO LONGER FUNCTIONS VERY WELL. I AM NOW IN AN ELECTRIC WHEELCHAIR AND NEED A CARETAKER. I WELCOME ANY ADVICE OR COMMENTS. THANKS, LIZ COHEN

Reply
Ed Tobias avatar

Ed Tobias

Hi Elizabeth -

I've not used the Neubie. In fact, its clinical trials for use on MS patients have not yet progressed past trials on healthy people.

I'm sorry about your accident but, not being a healthcare professional, I can't recommend something to. Have you done any conventional physical therapy to try regain some of your lost motion?

Ed

Reply
Linda Lane avatar

Linda Lane

If there are any clinical trials for the Neubie I would like to be considered. I was diagnosed in November of 2022 at the age of 74.
I suspected there was something wrong for several years but the Dr.'s just passed it off to getting older. I believed I had MS so I insisted on a spinal tap. And there it was! I am being treated at the Yale MS clinic in North Haven, CT. This has completly disrupted my life and I am in pain with terrible spasticity in the legs. It has hit me very hard. If you could direct me to any trials of the Neubie I would appreciate it. Thank you.
Linda Lane

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.