Living with Nervous System Tumors

I am a 20 year old female. I found out a couple years ago that I have Myoclonus and a ‘lesion’ in the pit of my cerebellum.
My problems started when I was in my sophomore year of high school. I woke up one morning and was eating breakfast, when suddenly I started shaking out of nowhere.

My mother and I thought that I might have diabetes but when I got tested the next night, we were wrong on that prognosis. I ended up going to the hospital the next night because I was having numerous episodes in a row. One would happen and then I would get about 10 minutes to maybe half an hour and then it would hit me again. I was scared out of my mind. I didn’t know what was happening.

Numerous doctors stared at me whenever they occured and it made me really uncomfortable. I ended up going to a couple of different hospitals because none of the doctors had any clue as to what was happening with me. After about a month and a half of MRI head scans, blood work and other terrible tests, such as a spinal tap, we found out that I have a ‘lesion’ as they call in right in the pit of my cerebellum. Unfortunately my father died of a brain tumor in the exact same area, so we didn’t waste time in trying to figure out we were going to do.

Since there arent any doctors that are really familiar with disorders of the brain. We ended up sending my information to a specialist doctor in New York. He look at all my tests and everything else. He gave us information about Myoclonus, and we looked over it and found it to be exactly like what I was going through. That’s how i found out about my disorder and I’ve lived with it for about 2-3 years now. It’s still a struggle for me after I have had a particularly bad one but I have been doing my best. There are some episodes that I have where I just visibly tremble and other times where I have to sit down because my arms and legs are twitching about and its hard for me to walk. During bad episodes, its hard for me to walk, talk, or even control my muscles. A lot of times I end up completely worn out.

I’m really glad for the people in my life who are there to help me if I’m having an episode and need help. They have helped me to cope with this disorder.
That’s my story.