My Multiple Sclerosis Story
By 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.
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 lead 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.
In the years since my diagnosis, I’ve been the Master of Ceremonies at the MS Society’s National Leadership Conference four times, raised over $325,000 for the NMSS to date through a diverse marketing effort as a Walk MS Team Captain, participated as a Patient Ambassador for multiple events for both the NMSS and 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, Sirius XM Satellite Radio, and NY1 in various spots promoting living well with MS.
I’m excited to be fundraising for MS4MS this year 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 step-father to Sarah’s boys, Armen and Jamie.