In order to stay up to date on latest treatments, drug discovery, clinical studies and how to manage Multiple Sclerosis everyday MultipleSclerosis.net brings you frequent articles, blogs, points of view and advice from leading patient advocates and professional medical experts.
Dave Bexfield – ActiveMSers
Dave Bexfield is the founder of www.ActiveMSers.org, a website designed to help, motivate and inspire those with multiple sclerosis to stay as active as possible—physically, intellectually and socially—regardless of physical limitations. Established when Dave was diagnosed in 2006, ActiveMSers has helped hundreds of thousands of people with MS from around the world through its encouraging website, blog, Twitter feed, Facebook page, Instagram pics, and discussion forum. His motto: Be active, stay fit and keep exploring! Read more.
Stephanie Buxhoeveden, MSCN, FNP-BC
Stephanie lives in Virginia with her husband, Michael, and their two fur babies. She is a Nurse Practitioner, fitness enthusiast, and self proclaimed science nerd. At the age of 25 she achieved her longtime goal of getting accepted into a graduate program for Nurse Anesthesia. However, during her second semester she suddenly lost all sensation in both legs and her right arm. After ignoring her symptoms for an embarrassingly long amount of time she finally went to the emergency room and ended up being admitted as a patient for the next seven days. An MRI and a spinal tap cut what she thought was her dream career in Anesthesia short before it even started. However, instead of letting that be the end of her story it is only the beginning. Read more.
Cathy Chester was diagnosed with Multiple Sclerosis in 1987, but has lived with MS symptoms since 1981. Now in her fifties, her philosophy is life is precious and should be lived to the fullest each and every day. She views her MS as merely a small part of who she is as a person. Some days are better than others, but each day is a gift and one she cherishes dearly. Read more.
I am a 60-year-old attorney and part-time professor at Montclair State University and Ramapo College in New Jersey. My wife Cathy, a healthcare blogger and MultipleSclerosis.net contributor, has been battling relapsing-remitting MS throughout our 30-year marriage. This has dramatically altered our roles, as it has for many spouses (and children) of those with chronic illnesses. Read more.
Dan and Jennifer Digmann
Dan and Jennifer demonstrate two different faces of Multiple Sclerosis. Jennifer was diagnosed in 1997 and has secondary-progressive MS. Dan was diagnosed in 2000 and has relapsing-remitting MS. The Michigan couple met at a National Multiple Sclerosis Society event in 2002, were married in 2005 and have dedicated their lives to MS activism and helping others to live their best life. Read more.
Having taken turns writing for radio and reference books, then cranking out an unbearably serious first novel—Kim Dolce is now exploring the lighter side of life: Coping with MS.
After her first MS attack in 1999, Kim was diagnosed with Relapsing-Remitting MS in 2005 at the age of 48. She maintained a wall of terrified, grief-stricken silence about her disease until 2009, when she found an online MS patient forum she liked. Read more.
Lisa Emrich is a patient advocate who has been helping patients educate and empower themselves since 2008. After being diagnosed with multiple sclerosis in 2005, Lisa learned firsthand the challenges of navigating the healthcare and insurance systems as a self-employed freelance musician in Washington, DC, performing on horn and piano. She uses her experience to educate patients and encourage them to take an active role in their own health care. Read more.
Matt Allen G
My name is Matt and as of June 2014 I am 24 years of age. I was diagnosed in August of 2010 at the age of 20 and it was a rather quick diagnosis. If you don’t include the sciatica I had a month earlier (which may or may not have been MS related; I am not sure) then it took just one month for me to notice a spreading numbness in my right foot, develop muscle weakness, visual issues, see a bunch of doctors in the ER as I continued to fall apart, get referred to see a neurologist, require the use of a wheel chair, get an MRI, then a Lumbar Puncture, and finally be diagnosed with Multiple Sclerosis. Read more.
My experience with MS goes back to childhood, well before my own diagnosis. My grandfather (and his father before him) suffered from MS and eventually became completely disabled. Then one winter day in college, I woke up and fell flat on my face. I proceeded to have trouble walking and standing the rest of the day until suddenly I couldn’t use my legs anymore. I was hospitalized and my doctors ran numerous tests before confirming what seemed obvious to my family: I had MS. Read more.
Christie is a number crunching photographer who loves riding really fast on her bicycle and happens to live with Multiple Sclerosis. Although initially diagnosed in 2009 with Clinically Isolated Syndrome (CIS), Christie got the official MS nod a year later after MRIs revealed new lesions. Read more.
A few years back, Laura Kolaczkowski recognized that in the rapidly-changing world of e-health, research skills are one of the best tools an internet-informed patient can possess. She had a heart attack in 2008, and even though she was happy with her medical team, she found there were still many unanswered questions that the normal office visit time didn’t allow to be addressed, and she turned to the internet to further understand her experiences. Read more.
Mariah Zebrowski Leach
Mariah is a writer and patient advocate who lives in Colorado with her husband and two young sons. Diagnosed with rheumatoid arthritis in the middle of law school, Mariah now uses her law degree to help people with chronic health issues. Read more.
Nicole Lemelle is a writer, an activist, and a person living with Multiple Sclerosis (MS). She was diagnosed with multiple sclerosis in 2000 and lived relatively symptom free for years. In 2009 an exacerbation hospitalized her for three weeks. This event forced her to retire from her dream job at the age of 34 and find a new passion. She began writing and working within the MS community. Read more.
Meghan, 23 at the time, was on vacation August of 2013 with her family at Lake Lure when she started complaining to her cousins that she was seeing double. She decided to ignore it and continued to see double mountains and boat docks without telling her parents, a neurologist and a nurse. She told her dad what had been happening when they got home. He performed a few neurological tests in the living room and said, “Megs, you have to come to the office tomorrow.” In February 2014, she was officially diagnosed and, after having waited, says it was almost a relief to find out. Read more.
Brooke Pelczynski is an 27 year old artist, illustrator, and multiple sclerosis fighter, based in Brooklyn, NY. She was diagnosed in 2012, the summer before she graduated with her BFA in Illustration from the School of Visual Arts. Dropping paint brushes and seeing stars caused for a pretty wild senior year. Read more.
Emily Rhoades considers the role of Multiple Sclerosis in her life similar to that of an unexpected 4th child–but one who likely won’t move out after 18 years. When her youngest son was just 3 months old, a severe case of optic neuritis in March 2010 led to her Multiple Sclerosis diagnosis at the age of 31. Following the end of her 14-year marriage in 2014 and with her ex-husband subsequently moving out of state, she found herself divorced and entirely responsible for their 3 school aged-sons. Becoming a single mother while battling a chronic illness was as much a leap of faith as a total necessity. Read more.
Ashley is a 30-year old, living right outside of Austin, TX. She was diagnosed with Relapsing-Remitting Multiple Sclerosis in August 2010 at the age of 22. The diagnosis came shortly after she graduated with her Associates Degree in Criminal Justice. She is a mom of two boys, Jason who is 12 and Luke who is 9. Read more.
Hello. I’m Dianne and I have MS. Lol…that pretty much sounds like an introduction at an AA meeting, but in actuality, officially as of 7/13/07, my diagnosis date, that became my truth. However, MS doesn’t define me because who I am is a proud Christian, African American woman that’s a strong and courageous single mother of 2, a loving, devoted daughter, sister, auntie and a loyal friend that happens to have Multiple Sclerosis. Read more.
TK Sellman, RPSGT CCSH is a career journalist (Columbia Chicago, ’90). She was diagnosed with idiopathic hypersomnia in 2010, which inspired her to go back to school to become a sleep technologist in 2012 and a professional sleep educator in 2014. Her IH diagnosis was later abandoned when her neurologist in Seattle confirmed RRMS was to blame for her continual fatigue, as well as other symptoms of relapse (tremor, migraine, and tinnitus). Read more.
Marc Stecker – Wheelchair Kamikaze
I’m Marc, a 50-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker “Wheelchair Kamikaze”. Read more.
In 1997, Donna and Lynn Steigleder united their two families in marriage. As they worked to blend their two families, both had very active, busy lifestyles. When they got married, Donna had a daughter, age 13 and a son, age 10. Lynn had a son age 10…Within the next five years, Lynn had persistent signs that something was wrong. Having been trained as a nurse, Donna knew in her heart that Lynn had MS. His father had died from complications of MS when he was in his forties. Knowing what could lie ahead, he stubbornly refused to consider that he might have MS for several years until at Donna’s insistence, he finally saw a neurologist in 2006 who confirmed that he did indeed have MS. So, began Donna’s role as an MS Caregiver. Read more.
I live in a small city in the middle of England with my wife and young daughter. After working full-time in Arts Marketing for over 20 years, I’m currently “between jobs”. All offers gratefully received! I was diagnosed with MS in 2005 after having vague symptoms over a number of years. I’m currently having Tysabri infusions, after trying Rebif (interferon beta-1a) injections and Tecfidera (dimethyl fumarate). What’s next? Read more.
Hi, my name is Calie and I am a 25 year old wife and momma to an extremely rambunctious little boy! I was diagnosed with Relapse-Remitting MS when I was 14 years old. After coming to terms with the diagnosis at such a young age, I was completely overcome with shame, guilt, and fear. To be honest, I was terrified. I couldn’t believe that my body had betrayed me like that and that I had a disease. An incurable one at that. Read more.
Kathy Reagan Young
Kathy Reagan Young is the founder of the off-center, slightly off-color website and podcast at www.FUMSnow.com. Read more.
Jeanne Hecht, MPA, PMP
Jeanne Hecht is Senior Vice President and Global Head of Site and Patient Networks at Quintiles, a position she was appointed to in October 2014. In this role, Jeanne is responsible for leading, implementing, and driving a site and patient network-centric global strategy that leverages leading-edge technology. Read more.
Nikki is a crafty wife who loves to knit, sew, and DIY to make her home cute and functional (all as inexpensively as possible). She is a city-born gal who now lives on the edge of the country with her family and hopes to be a farm gal ASAP! She is an artist and outdoor enthusiast whenever possible. She and her husband don’t have any kids yet, but have some wonderful critters that keep them busy, not to mention entertained. Her life was changed by an MS diagnosis at the age of 19 but she has learned that it doesn’t rule her life and now her goal is to help others through her own experiences.
Over a quarter century ago in the beginning of “living with MS as a family” there was nothing available about MS spouse caregiving. I would bundle up our toddler daughter and transfer Patti out of her wheelchair and into our car to drive to our local library where I poured over hardback volumes of the New England Journal of Medicine. Read more.
I have been blogging about living with MS since 2006 when I was diagnosed at 22. I found during my diagnosis that there just simply weren’t enough resources for the younger crowd so I decided to try to tackle that myself. My relapses have been few, mostly optic neuritis, and until about a month ago I have not been on a medication consistently. Read more.
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