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 handed me pamphlets on DMDs. Every question I asked about other alternatives were immediately shot down. Could it be Lyme disease? “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 five-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.
Then 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 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 and have not had any side effects at all. 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 ice hockey once a week, have recently started playing racquetball, and I started jogging.
When people find out 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!” 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. My group can be found on facebook at www.facebook.com/MustStopMS and on twitter at @MustStopMS.
This article was written by Randy L. Patrick Jr.
cervical spine, disease modifying drugs, DMD, exercising and MS, gilenya, lesions, lumbar puncture, MRIs, oral MS medications, oral steroids, spinal tap