Introduction:  by Mary Pettigrew

If there’s anyone who’ll always be there for you – who’s fully committed to helping others – & who works tirelessly to put his best foot forward day in & day out, that person is Randy Patrick!  Randy & I first met on Twitter & have known each other for several years.  Through blood, sweat, & tears we’ve both watched & supported one & all who strive to make a difference in the MS community.  Many of us continue to play an active role in the various passion projects, events, & advocacy programs wherever possible.  Randy seems to take his involvement a step higher though…& in my opinion, he makes it all look effortless.  Randy’s reputation is deserved of accolades for others to take notice.  He is the epitome of kindness, his passion is palpable, & he sets an example of what it means to be a SUPERB HUMAN BEING!  His weekly contribution as the host of #ChatMS is stellar.  The show remains consistently interesting, upbeat, & topical which attracts an engaged, interactive audience anxious to show up each Monday evening  – whether it be live on Twitter or on Facebook.  The more Randy does for the MS community, the more he continues to be one of my favorite people.  I’m honored to know him & to be able to call him my friend.

Read more about Randy’s story here.  I strongly urge you to follow him on Facebook or Twitter (if you haven’t already) & join in for some #ChatMS fun & helpful information when you are able, so mark your calendars for Monday evenings at 7pmEST!  

Randy’s Story: 

I woke up on July 1st, 2012 with numbness around my tailbone area that spread throughout my stomach after a few hours or so. I could tell if something was touching me, but it just didn’t feel normal. This was a Sunday so my doctor’s office was closed. I spoke to the on-call physician and was directed to the emergency room. I went through many questions and disclosed my normal activities. My blood work came back fine so they decided to do an MRI of my spine, which too came back fine. Hours later I was released and told to call my family doctor the next day.

The next day I woke up and the numbness had spread up to my chest and down through my legs. My feet were also very tingly. Back to the ER I went! I had another MRI (this time with contrast) of my spine and lumbar spine. That too showed nothing. They did more blood work, which still looked okay. I was released again and was told to make an appointment with a neurologist for the next day. My neurologist basically told me I must have injured myself from falling playing ice hockey. When I asked about the numbness all over, I was told I was fine and that it was all anxiety and it was all in my head! He did put me on oral steroids, just in case.

A few days later I started getting tingling in my fingertips, which prompted an MRI of my cervical spine (neck). This showed a lesion, which led to an MRI of the brain. This too showed a lesion. My neurologist all of a sudden went from “It’s all in your head” to “It’s MS – here, pick a medicine,” and proceeded to hand me pamphlets about the various DMDs (disease modifying drugs) intended to treat MS.  Every question I asked about other possibilities, causes, or alternatives to this diagnosis of MS were immediately shot down.  Even when I asked, “Could it be Lyme disease?” without hesitation, my doctor replied, “NO!  Pick a med ASAP.”

Talk about a roller coaster ride of emotions!
I didn’t know what to think…
I’m going to be in a wheelchair…or worse!
How am I going to take care of my then five-year-old son?
I was pretty bummed out.

My lumbar puncture had even came back perfectly normal, so all they had were two lesions from the MRI scans to confirm my diagnosis of MS as definite.

It wasn’t long before I started doing my own research and found some online forums. Talking to others affected by the disease helped me the most. I realized MS isn’t a death sentence and it is manageable. There are options to help slow this thing down.  We can fight this thing!

I switched to a neurologist who specializes in MS and couldn’t have asked for a better experience. He was able to sit down with me and explain why he too thought it was MS and explained each treatment option with me. I started on the oral pill Gilenya in February 2013 and haven’t had any issues. All of my numbness has pretty much gone away. My hands still feel a little funny sometimes, but other than that, I feel great. I’m trying to stay active with sports and am working on starting a regular exercise routine.

As I mentioned earlier, I’ve received the most benefit from talking to others who are affected. I want to help others also.
MS stops connections  – connections stop MS!  This is why I started the group “Must Stop MS!”

I want to build connections, spread MS awareness, help others, and fight this thing! I do not want anyone else to feel the same way I did after being diagnosed. I also started a weekly live chat on Twitter called #ChatMS in which I teamed up with Kayla Chatkiewicz from the group “Keep S’Myelin.”  As a result of our co-hosting collaboration, Kayla and I soon extended the chat to Facebook.  #ChatMS was launched in March of 2015, so we are fast approaching the 2.5 year mark.  

Each week we discuss a different topic all related to Multiple Sclerosis.  People with MS or even caregivers can share their experiences and offer tips that have helped them.  Its a great place for people to connect and make new friends.  They also realize they aren’t alone in their fight.  We will win this battle!

Randy Patrick was recently nominated by WEGO Health for his outstanding advocacy & leadership with #ChatMS on Twitter. Here is the link for more news about his well deserved nomination!

You can also find Randy on:
Facebook –
Twitter – @MustStopMS
Instagram – @must_stop_ms

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