My Multiple Sclerosis Story

By Guest Author Michael Weiss

I was diagnosed with Multiple Sclerosis in 2004 after many years of mysterious symptoms. I don’t exactly remember when the symptoms started and over the years many symptoms that I now believe were due to my MS (numbness, tingling, pain, vertigo, etc.) were written off to pinched nerves and old sports injuries. As the years went on, the symptoms got worse and some new ones popped up, but I always seemed to push through. The symptoms would often go away, and I would feel fine after a while. Later, I found out that approximately 85% of people with MS are initially diagnosed with Relapsing Remitting MS, which is what I was experiencing.

Photo Courtesy / Michael Weiss

Just prior to my diagnosis, my many symptoms including severe fatigue, cognitive problems, increased and continued pain, numbness and vertigo were worsening. There were days that the entire left side of my body was numb and after 10 hours of sleep I could barely drag myself out of bed to get to work. I remember being told by one doctor that my symptoms were “physiologically impossible” and that I should get a massage and try to relax. In other words, it was all in my head. I almost started believing that.

That changed shortly after the birth of my second child when I was hit with the exacerbation that led to my diagnosis. Everything got worse and I went numb from the waist down. My vertigo became dangerous and I was having a hard time even taking a shower. It was then that I knew I needed to find out what was going on. I went from my doctor to a chiropractor to an orthopedic surgeon and finally ended up getting an MRI. From there, I was referred to a Neurologist and was finally diagnosed with Multiple Sclerosis.

I remember being in shock when I heard the diagnosis, but I also remember being relieved. I had braced myself for a much worse diagnosis (ALS, brain tumor, etc.), so MS was a relief of sorts. I was also relieved because this confirmed I wasn’t crazy and now that I knew what I was dealing with I could begin to move forward. After the initial shock wore off, I began to educate myself about Multiple Sclerosis. Thanks to the support of friends, family, and the MS Community, I dug deep and decided to focus on what I had control over. This is the basis for how I try to live with MS. It wasn’t overnight, but I came to realize that as patients, we owe it to ourselves to be proactive, take ownership of our disease and do something every single day to put ourselves in a position to be successful. This mindset took the form of getting involved within the MS community in many ways.

Photo Courtesy: Michael Weiss

In the years since my diagnosis, I’ve been the Master of Ceremonies at the National MS Society’s (NMSS) National Leadership Conference four times, raised over $375,000 for various MS organizations, participated as a Patient Ambassador for multiple events for both the NMSS and Multiple Sclerosis Society of America (MSAA), worked as a member of the Board of Trustees for the NJ Chapter of the NMSS 2011 – 2014, participated on the NMSS National Goal Steering Committee as both a Team Member and/or a Co-Lead 2011-2013 and have appeared on Today NY on NBC, SiriusXM Satellite Radio, and NY1 in various spots promoting living well with MS.

Most recently, I’ve been working with Mission Stadiums for Multiple Sclerosis (MS4MS). MS4MS is a registered 501(c)(3) non-profit organization whose mission is to raise awareness of MS at sports stadiums while raising funds directly for families with MS Warriors and for the advancement of research at the Johns Hopkins Project Restore MS Research Center in hopes of finding a cure. You can learn more about MS4MS and about the 2021 MS4MS Bracket Challenge Fundraiser here. I’m incredibly excited to be working with MS4MS and hope to be able to make a difference in the lives of everyone impacted by MS through this up-and-coming organization! At home, I am working to be the best husband I can be to my wife, Sarah, father to my children, Dylan and Emma, and stepfather to Sarah’s boys, Armen and Jamie.

Editor’s note: Michael Weiss is a New Jerseyan with a 25 year career in sales and management in telecommunications. When there isn't a global pandemic, Michael loves to attend Giants and Knicks games, and live music. You can learn more about Michael’s MS4MS fundraiser, team, and make a donation by clicking here.