“Multiple sclerosis (MS): Drug targeting Epstein-Barr virus shows promise.” (Medical News Today) – An Epstein-Barr (EBV) drug shows improvement or stops progression altogether for #MS patients by the end of the first year of treatment. No reports of severe reactions to the medication came from the thirty-nine-month phase one study. “With progressive MS, spontaneous remyelination without therapeutic intervention is unlikely, highlighting the impact that these MTR data provide suggesting remyelination may be driving the prolonged sustained [Expanded Disability Status Scale] EDSS improvement.” (Mark Freedman, MD) How does the drug work? Barbara Giesser, MD, stated, “Clearing the virus would decrease the stimulus for the immune cells to attack the myelin.” Check out the article link for further information.
If you are interested in participating in the next round of studies related to EBV medication treating multiple sclerosis, check out: Clinical Trails.gov for the Atara Biotherapeutics study: https://clinicaltrials.gov/ct2/show/NCT03283826.
Simoa’s new blood test “is able to measure proteins, nucleic acids and other biomarkers of disease at a single-molecule level, requiring only a regular blood sample.” (Park) This test for RRMS “analyzes the serum and plasma in a blood sample to measure neurofilament light chain (NfL), a protein that’s been linked to axonal damage caused by neurological diseases like MS, Alzheimer’s disease, amyotrophic lateral sclerosis and more.” Further study has confirmed, “when the test detected higher levels of NfL, it correlated to an increased risk of future disease activity.” If you are symptom-free, it can be easy to believe you are in the clear; this test may shed light on changes happening and identify the best treatment plan to secure a healthier future. Read the full article for more details.
I wondered the other day, does my story inspire or depress other MSwarriors? The question came to mind as I thought about my blog and how it must seem to other MSers who read it. I am quite active in promoting my memoir about my life in remote Alaska and living with MS. Each week I’m out Jeeping and filming my YouTube channel, Wyoming Jeepers. I’m active and doing well all day, most days. News flash: I haven’t always been able to live this busy life. The truth is, I lived in pain for years, couldn’t get out of bed before 10 am, and was exhausted, dropping back into bed by 10 pm as if I had worked a hard day when in reality, I had accomplished little to nothing. My doctor wrote “100% permanently disabled” on a disability form each year. I don’t look disabled now, years later, but I didn’t look disabled then, either.
I think about the changes in my life and can only guess the reasons behind its quality today versus ten years ago. The differences I can identify are:
1) I moved from Alaska to Wyoming – from a coastal, temperate rainforest to the desert.
2) I moved to medical disability and stopped working a high-stress job in school administration in 2011.
3) In 2013, I began Tecfidera (dimethyl fumarate) and continue on the DMT (disease-modifying treatment).
4) Sadly, my mother passed away in 2017, but I no longer have the stress of managing her complicated estate with her passing.
5) I lost weight.
6) After moving to Wyoming, I made close friends and began living an active life—something remote Alaska didn’t easily provide.
7) I spend far more time outside in the sun in Wyoming.
I share this with you in hopes that my story may give you ideas. I don’t know if the difference in my pain level, ability to function clearly, and new energy level come from the changes I made after my medical disability, but the results are indisputable. I also know that if I am stressed or lose sleep, symptoms of multiple sclerosis return within a day.
Dream. Achieve. Celebrate. I encourage you to be an MSwarrior and fight to take back what is yours—live life to the fullest (which in reality may only mean getting dressed and looking out the window, but if that’s all it is for you today—do it. I’ve been there, I know.) Be well, my friends!
May 3, 2022 – AAUW – Cody, Wyoming Library @ noon – “Conquering Disabilities with Attitude”
Colan, Peter. Woman Jumping Image. https://unsplash.com/photos/LEgwEaBVGMo (accessed on April 25, 2022).
Medical News Today. “Multiple sclerosis (MS): Drug targeting Epstein-Barr virus shows promise.” https://www.medicalnewstoday.com/articles/multiple-sclerosis-ms-drug-targeting-epstein-barr-virus-shows-promise#1 (accessed April 25, 2022).
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Lityo, Celine. Woman in Road image. https://unsplash.com/photos/6PQOO_SmxvY (accessed on April 25, 2022).
Park, Andrea. “Quanterix’s blood test for multiple sclerosis relapse risk nabs FDA breakthrough nod.” Fierce Biotech. https://www.fiercebiotech.com/medtech/quanterixs-blood-test-multiple-sclerosis-relapse-risk-scores-ticket-fda-fast-track (accessed April 25, 2022).
Testalize.me. Drug Test Image. https://unsplash.com/@testalizeme (accessed April 25, 2022).
Wisz, Blake. Camper Image. https://unsplash.com/photos/TcgASSD5G04 (accessed April 25, 2022).