It was March 19, 1999 during my senior year of high school when I woke up with blurred vision. I had always had better than 20/20 vision, but that day everything was different.
Later the same day at school I noticed a tingling on my left side. My whole body from breast down to my toes was numb. I was in shock and scared, but tried my best to stand tall because I didn’t want anyone to worry about me.
Other than being diagnosed with migraines at age 5, I had always been a healthy child. So, not too long after noticing the numbness, I went to my next class. It was there I noticed the vision was getting even worse. It even hurt my eyes to read. I started to cry and had to call my mom and explain everything.
She took me to an eye doctor who said my vision was still 20/20, if not even better. He said that being a senior was just literally causing me to have problems focusing. My mother, not too happy with his response, took me to my family doctor. He noticed something odd with my situation.
My hands were also trembling, so he asked me to hold a small cup of water. The cup emptied completely when I held it. My doctor wasn’t sure what was going on, so he got me an appointment with a pediatric neurologist. The neurologist had reviewed all of the information from my doctor.
My mom and I were told that he thought he knew what may be wrong with me. He said it couldn’t be confirmed without further testing. I had a MRI that showed innumerable amounts of lesions that were overlapping each other. After seeing the MRI he wanted to be sure, and did a spinal tap.
When those results came back it was confirmed that I had MS. I started on medication immediately to help slow progression. Due to the very high cost of medication, my parents had trouble with the growing expenses. The National MS Society was able to provide financial assistance that ultimately helped me stay on my medication.
With the medication and the great support from my family, friends, the NMSS and of God, I was getting better and stabilizing. Due to some personal issues I got worse a year or so later, and was using a walker. I was put on steroids several times, while still getting worse.
People who didn’t know my situation actually thought I was constantly walking around drunk. Not only was I having trouble walking and trembling, but I stuttered as bad as Mell Tillis. All of this happened within two years of my diagnosis, but thank God for my checkup with my neurologist in 2001.
He wanted to try me on something new for secondary progressive MS patients. I was thinking, “Chemo? A cancer treatment for MS?” My neurologist told me of a new treatment that National MS Society research funds helped make a reality. When I walked into the office the first time, I was using a walker. But due to the treatment, I got a little better each and every time.
By my last treatment two years later, I was walking on my own without a walker, with very few visible signs of MS. Yes, as of now, I am on full disability and really can’t hold a public job. But due to the great research, time and effort the MS Society has put into learning more about MS and helping to find a cure, I am so much better than where I was.
Now I have a very happy and fulfilling life with a husband that at times forgets I have MS. I have a little girl that makes sure to tell everyone that I do have MS, and wants to do everything she can to help me find a cure. The small children I watch at home - including my two nieces and others – try their best to help me out when I’m having a bad day, and want to help find a cure for MS.
I thank God for what he has done for me, and for giving us the National MS Society to help everyone that has MS.
-Karen Bailey
If you would like to share your story, contact Christy Knutson at christy.knutson@nct.nmss.org.