Treasure Coast MS Support and Research Sharing Group

My name is Vikki Boyd. I was diagnosed with MS at age 51. For the first 12 years, my MS was asymptomatic--I only experienced sensitivity to hot weather. In fact, one neurologist diagnosed me with "benign MS". ha ha, a cruel joke.

In 2022, I began experiencing a slow progression of weakness in my right leg, but no attacks or active lesions on MRI.

I was a very physically active person. I was a professional dog trainer, hockey. player with a busy social life. The anxiety of my leg getting wore heavy on my emotions and confidence.
Even though I kept mentioning to my MS doctor that I was experiencing leg weakness with foot drop, he never suggested that I explore upgrading my therapy to the newer B cell depleting DMTs. At the time, I was taking Gilenya.

I only learned of the B cell depleting therapies and how they worked completely different from the other mainstream (S1P) receptor therapies after I read Dr. Stephen Hauser MD, chair of the UCSF Department of Neurology from 1992 to 2017 and director of the UCSF Weill Institute for Neurosciences book "The Face Laughs While the Brain Cries" . I soon began researching everything I could on Ocrevus; how it was discovered from some of the cancer drugs given to MS patients in the 70's, how it was trialed, and eventually FDA approved in 2015. This drug was a game changer!

I also learned about 'smoldering MS', which was apparently what I had been exerienceing. Smoldering MS is when patients may not continue to have attacks and no new lesions on MRI. I was a classic case--older, stable MRIs' and no attacks but slowly getting worse.

I am now on going on my second infusion of Orcevus this fall [2026] and I have a new neurologist. Maybe it's placebo from less anxiety, but I am experiencing less fatigue.

Through this journey, I’ve become an advocate for myself at my medical visits. I no longer sit passively, and I am not afraid to ask challenging questions. .

KNOWLEDGE IS POWER

I have taken in and studied the latest research from the MS Symposium held in South Florida MS Symposium on November 9, 2024.

I decided to start this local MS group for the Treasure Coast since there are no official MS Society Chapters in the Treasure Coast.

I’d love to hear from you! I hope to set up a time to meet in person. No photos will be taken, and members will be asked to agree to confidentiality since many MSer's are private with their diagnosis.

Respectfully,
Vikki Boyd
408 836-7416 Text me email: vfoleydesign@yahoo.com
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