MS News Notes: PoNS Online, Foralumab, Masitinib, Gaslighting
Columnist Ed Tobias comments on the week's top MS news
Welcome to “MS News Notes,” where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening:
Tongue stimulator now easier to obtain
A Portable Neuromodulation Stimulator (PoNS) is a mouthpiece that mildly stimulates nerves in the tongue that lead to a brain region controlling movement. This stimulation promotes neuroplasticity, a process in which the brain rewires itself. Used as part of a physical therapy program and combined with intense exercise, PoNS has improved the walking and balance of people with mild to moderate MS.
PoNS was approved for use in the U.S., Canada, and Australia a couple years ago. The news update, according to MS News Today‘s Joana Vindeirinho, reporting in the article “PoNS Device Now Available Online to Patients in US,” is that patients can now buy the device directly from a website.
It’s important to note, however, that PoNS requires a prescription and that patients must be guided by a trained physical therapist.
Positive news for foralumab in small study
There’s been great interest in the investigational therapy foralumab, both because it’s a nasal spray and because it’s intended for people with secondary progressive MS. Foralumab is an antibody-based treatment designed to target the CD3 protein found on the surface of T-cells in the immune system.
In the article “EDSS Score Drop of 1 Point Seen in 2nd SPMS Patient on Foralumab,” Lindsey Shapiro reports on how a second patient is showing some reduced disability after 11 months of treatment. Five other patients are participating in this study at Brigham and Women’s Hospital in Boston.
Phase 3 trial of masitinib approved for progressive MS
People with MS in the U.S. can now join MS patients in several other countries enrolling in trials of masitinib, a tyrosine kinase inhibitor. As Lindsey Shapiro’s article “FDA OKs Phase 3 Trial of Masitinib for Progressive Forms of MS” notes, the study is expected to include up to 800 participants at about 75 sites in the U.S., Canada, Europe, Israel, and South Africa. To be eligible, patients must be between 18 and 65, have either primary progressive MS (PPMS) or non-active secondary progressive MS (SPMS), and show no evidence of active inflammatory brain lesions.
Are you being gaslighted by healthcare providers?
There’s a long history of healthcare providers dismissing or downplaying medical complaints by women, known as medical gaslighting. Researchers at the University of Illinois Urbana-Champaign recently studied this historical and ongoing problem.
As Marisa Wexler writes in “How ‘Medical Gaslighting’ Affects Women With Chronic Illness: Study,” researchers highlighted how women are often dismissed as “crazy” and made to feel shame or guilt about their medical issues.
“Most women we talked to had lived with their health issues and pain for years,” Charee Thompson, PhD, a professor of communication at the University of Illinois Urbana-Champaign and co-author of the study, in a university press release cited in the story.
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.
patricia barnes
im sore from lower back and left leg, its been forevervthis pain.
Paula
Was curious if maybe the pons system would work on speech.
Ed Tobias
Hi Paula,
I don't know if it could be used in combination with speech therapy, as the PoNS is used for physical therapy. There is a link in our story to the company that manufacturers the device. You might contact them to ask this question.
Ed
Joseph Genarella
Hi Ed,
I had RRMS since I was 20 years old and 2 years ago I progress to SPMS. not fun. I am on Ocrevus every 6 months to slow down the progressions. is there another infusion that would be effective ?
thanks
Ed Tobias
Hi Joseph,
I'm not a physician so I really can't give you a recommendation. However, I do know that Ocrevus is considered to be a very effective DMT. But, there are more than 20 other DMTs available. Among those, the ones considered to be the most effective, IMHO, are Lemtrada, Tysabri, Kesimpta and Navantrone. If you don't think Ocrevus is effective I'd ask your neuro about those.
Ed