Hello, my name is Alison.

I’m 47 years old and I work full time as the Minister for Operations at a United Methodist Church. I’m lucky to be able to say that I love my job. Crafting is my passion and I also enjoy watching baseball, spending time with my family, and using power tools (my sandblaster is my favorite). Oh, and I have Multiple Sclerosis. I do my best to fill my days with experiences because they increase my happiness more than objects. I have learned to find joy every day.

As a 26-year-old college student in 1999, it started the summer before my senior year with a numb big toe. I was living with my cousin and his family. It was the greatest situation I could imagine. Going back to school to finish my degree, working full-time, spending the last 3 years living with my family. They took me in and treated me like I was their daughter. The kids were young and so there was always something happening. We were always at a sporting event for one or all of the kids. We had a pool in the back yard and in May we opened it up for the summer. One day in May I was laying by the pool and my toe felt like it was “asleep”, pins and needles. Everyone said not to worry it was probably a pinched nerve. I was not worried until it started moving. First, it moved to the other toes on my right foot then the toes on my left. It kept climbing, up my feet and legs. Until it was up to my belly button. My joints in each leg were stiff and hurt to move. This started a flood of doctor visits..

I went to every type of doctor I could find from chiropractors to neurologists. I had so many tests that I couldn’t even remember what tests were done.

Being a 26-year-old college student in 1999, my parent’s health insurance did not cover me. I also had to stop working because I could not get off of the couch. I had to sleep on the reclining part of the couch for several weeks. The kids were so great to me, they helped me get my clothes and walk to the bathroom or kitchen every day. I had to go to so many doctors’ appointments and I don’t think I could’ve made it to them without the help of my terrific family.

Sometime in September or October the pain and numbness receded, and I got back to my normal self. Well, my new normal, my new 100% was much different than my old one, but the pain was gone. The numbness came and went but was less of an issue. During all this time, not one doctor could figure it out.

Finally, I was told it was Lyme Disease. Not something you want to hear but living in NY it wouldn’t be too much of a shock. I was told that I had to go to the hospital and take very high doses of medicine (I think antibiotics). This scared me and with my parents living so far away, in Missouri, I didn’t know what to do. My parents asked a friend to come to help me. She came with me and we went to the Lyme Disease clinic on Long Island. We did not have an appointment but that did not stop us. We told the receptionist that we would wait to see the doctor in charge. We waited there that day for 8 hours. He finally saw me. He asked some questions and read my file. After all that, he came in and said, “you do not have Lyme Disease, do not take the medicine it could damage your liver.” I was so relieved and happy we waited, but I still didn’t know what was wrong.

Just before I left for Christmas with my family, a neurologist at Stony Brook Hospital told me that he thought I might have MS. He wanted to see me when I came back and he wanted me to find a way to get health insurance. So, in February of 2000, my parents and I went to visit the neurologist. He told me that I have MS and that he wanted me to go on disease-modifying medicine as soon as possible. What a hit to the stomach! I mean in 2000 the Multiple Sclerosis Society was the most famous WALK there was. I remember saying, “this can’t be good, having a disease with its own WALK”.

I can’t speak for others, but I am sure that being with me for this diagnosis had its good points and its bad. I mean sitting there hearing your child has a disease that has no cure has got to be one of the hardest things a parent can go through. I think about that often because it took so much strength for my parents to be there and I’m so lucky to have them as the captains of my support team.

After the diagnosis, I went on shots every day (ultimately that lasted for 15 years). So, to set the stage it was March of 2000, I was recently diagnosed, I was getting ready to graduate college and I was living with family. Cut to May of 2000, I graduated, got a job, and moved right outside Washington DC for my new job. I had no friends, no family there and I was starting a new job. It was surreal. But it helped me become Alison again and not Alison with MS. Everyone was against my move except for my parents and my brother. The rest of my family thought I was crazy to want to be alone in a new place while being sick. With the unwavering support of my immediate family, I did it and 20 years later I am still here and I am doing great!!!

My outlook for my future is wonderful. I feel like as long as I have the support of my loved ones, I can get through anything. Looking back, I feel like I learned so much after my diagnosis. You need to like and trust your doctor, you should not go to a support group until you are ready, everyone’s version of MS is different (like your fingerprint), try to always stay positive, always try to keep moving, and take help when you need it. Letting people help you takes courage.