Cindy's Story “This is serious – you have MS.”

In 2006, I woke up one morning and the skin on my legs and stomach was numb. I thought it was strange, but I didn’t really think any more about it. After having the numbness for about two weeks, I mentioned it to a co-worker who insisted that I call the doctor right then, so I did.

At the time, I was a single mom with two beautiful teenage daughters. My dad, who was age 88, was in a nursing home and failing rapidly. I went to the doctor, a little embarrassed because I thought the symptoms sounded silly. She immediately sent me to have a CT scan and told me she would call me with the results. The next day, I received a phone call from her and she said that I had lesions on my brain and that I either had had a stroke or I had Multiple Sclerosis (MS). She referred me to a neurologist. I was hoping that it wasn’t a stroke and I knew nothing about MS until later that day it hit me – oh, wow – that’s what Richard Pryor had and he had just died!

Two weeks later, I had my appointment with the neurologist and after examining me, she said she didn’t think I had MS, but she was going to do all the required testing to be sure. I went back and I had a visual test to record electrical signals produced by my nervous system, an MRI of my head, neck, and spine, and a much dreaded spinal tap. I had to lie flat on my back after the spinal tap for about 24 hours to prevent a leak. In February, spinal fluid was leaking from the puncture, giving me a horrible headache. The next morning, I went to the nursing home to see my dad and then on to the hospital to be given a blood patch back into my spine to relieve the headache. The next morning, I received a call from my mom saying I needed to get to the nursing home, that Dad was dying. By noon that day, my dad was gone.

The next few days were spent planning Dad’s funeral, spending time with my family and just grieving. I completely forgot about the testing I had gone through. Then the very day of my Dad’s funeral, the neurologist’s nurse called. She said the test results were in and that my doctor wanted me in the office as soon as I could get there. I’m thinking that I must have a brain tumor or cancer because she didn’t think it was MS. What could be so urgent? I told the nurse that I couldn’t come in, that it was my Dad’s funeral that morning. She went back and checked with the doctor and the doctor said to come in first thing the next morning.

When I got there, the doctor pulled her chair up right in front of me and said, “This is serious – you have MS.” The MRI revealed that I had nine lesions in my brain and four to five lesions in my neck and spine. She went on to explain treatment options and we decided on the daily injections as the best way to treat the MS. She finished by saying “when you can’t walk any longer, I will write you a letter for disability.” She basically gave me little hope.

Okay – so if I’m going to be in a wheelchair soon, I’m going to do everything that I’ve been wanting to do and do it now. And I did. I made a bucket list of things that I wanted to do and marked them off as I did them. I still have that list, but I look at it differently now. Now I add things on that I’ve done instead of marking things off.

I hate needles but had to begin giving myself daily injections. I learned what I needed to know about MS and thought about it all the time. I never felt good. I wondered how bad it was going to get. I listened to other stories about how bad they were with their MS.

Finally, I got sick of hearing about it. I learned what I could do and what I couldn’t do without wearing myself out. I stopped dwelling on it. If someone wanted to tell me a story about someone they knew who had MS, I told them I didn’t want to hear it. I pushed on, going to work every day. Ninety-nine percent of the time I stayed positive, but occasionally, I had a “why did this have to happen to me?” moment.

One of the best things to happen to me was that my insurance changed and I had to go to a new neurologist. He changed my thinking. He didn’t tell me that I was going to be in a wheelchair. He told me that he treated lots of people with MS that lead full, productive lives. They continued to work and did what they wanted to do. He was encouraging and told me that a positive attitude was so important. And he was right.

Now, today I am celebrating the tenth anniversary of my diagnosis. I’m not saying that it has been easy. I have chronic fatigue and I never really feel good. I have a few effects of MS, such as occasional foot drop, electrical sensations down my neck and spine, and once in a great while, I will have a “sleep-a-thon” when my energy just gives out. The only thing I can’t do is run – but that’s okay – I always hated running! But I will not give in to any of these things. I’ve learned to live with fatigue and keep going even when I don’t feel like it – you tend to forget your problems when you’re having fun or staying busy.

I would tell to anyone newly diagnosed with MS is that it’s not the end of the world. Stay positive. Live a healthy lifestyle. Don’t listen to the war stories about other people who have it. Show them that you can do it! Educate yourself and then put it out of your mind. That’s what I have done and will continue to do and one of these days soon, there’s going to be a cure for MS. The nurse that taught me how to give myself injections said “You’re not going to die from it, but you are going to die with it.” I think she was wrong.

I’m now remarried and have a great family that I love so much. If someone tells me I can’t do something, I will show them that I can. I’ve always had people praying for me and I know that no matter what, God is in control. I will not feel sorry for myself because I know there are so many others that have this disease a lot worse than me.