Life with MS

I woke up on July 1, 2012, with numbness around my tailbone that spread throughout my stomach after a few hours. 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 an on-call physician and was directed to the emergency room. I answered many questions and disclosed my normal activities. The blood work came back fine so they decided to do an MRI of my spine, which also came back fine. I was released and told to call my family doctor the next day.

When I woke up the next day, the numbness had spread up into 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. These, too, showed nothing. They did more blood work, which still showed okay. I was released again and told to make an appointment with a neurologist. My neurologist told me I must have injured myself from falling while playing ice hockey. When asked about the numbness all over, I was told I was fine, that it was all anxiety and just in my head. However, he did put me on oral steroids, just in case.

A few days later I started getting tingling in my fingertips, which then prompted an MRI of my c-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 handed me pamphlets of disease-modifying therapies.

Every question I asked about alternatives was immediately shot down. “Could it be Lyme disease?” “No! Pick a med ASAP.” Talk about a rollercoaster ride of emotions! I didn’t know what to think and had a lot of new concerns – “I’m going to be in a wheelchair, or worse!” “How would I take care of my 5-year-old son?”

I was pretty bummed out. My lumbar puncture even came back perfectly normal, so all they had were two lesions from the MRIs.

While waiting to see a new neurologist for a second opinion, I started doing my own research and found online forums. Talking to others affected by the disease helped me the most. I realized MS isn’t a death sentence and it’s actually manageable. There are options to help slow this thing down. “We can fight this thing!” I switched neurologists to an MS specialist and couldn’t have asked for a better experience. He was able to sit down with me and not only explain why he, too, thought it was MS, but also discuss each treatment option with me. I started on Gilenya in February 2013 and have not had any side effects. 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. I play softball, coach little league, and want to start playing ice hockey again.

When people hear I have MS, I always hear, “I’m sorry to hear that.” I tell them, “Don’t be, I’m not. I have MS for a reason, and I am fighting this thing!”

Like I mentioned, I received the most benefit from talking to other people with MS. I want to help others the way they helped me. 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 disease! I do not want anyone else to feel the same way I did after being diagnosed. My group can be found on Facebook at: www.facebook.com/MustStopMS and on twitter @MustStopMS.
 
Randy Patrick was diagnosed with MS in November 2012 at the age of 30. He is married to Tracy and has a son, Carson. He founded the group Must Stop MS to raise awareness and provide information and support to those affected by multiple sclerosis. He is also the co-founder of World MS Trend Day (July 31) and participates in weekly Twitter and Facebook chats named #ChatMS.