I started having issues when I was 35. I started having trouble learning a new computer system at work (as an RN). I have never had trouble learning new skills-apps on computers. I also was having issues with tremors in my arms and hands and then started falling almost daily. I truly believed I was going to be fired. I believed even my friends at work were against me. It truly bothered me. I would call and complain to my mom at night.
One of my dear friends was a neurologist, but she had moved to North Dakota and I asked her who I should see regarding my tremors in my hands and arms and falls and she suggested an M.D. in another state just 45 minutes away. I got an appointment and my parents went with me. The neurologist told me I had early onset Parkinson’s disease. She didn’t even order a pet scan to determine if I did really have early onset Parkinson’s. I was so confused I didn’t even ask questions I normally would as an RN.
I had married what I believed to be the man of my dreams. We did everything together. We were very happy. We had been married 9 yrs. when I started getting symptoms. I woke up March 17th, 2015 and told my husband that I felt as if I was getting sick and was calling off work. I called my manager. I told her I felt as if I was getting the flu. I told Matt I was going back to bed. When he returned home from work at 10 pm that night, I was unresponsive. He called an ambulance. He then called my sister. My sister called my parents and my parents called my brother. When I arrived at emergency department, I was not breathing on my own, so I was then intubated. I was in a coma for 2 weeks. I was sent to a level 1 trauma/educational hospital where I worked as a staff nurse and a case manager. I had M. D’s that took care of me that worked with me when they were residents. I was checked for every disease and virus known to man and negative for everything. My pet scans were all normal when I was in a coma. My spinal fluid was also normal. They contacted a physician at the University of Pennsylvania who asked for my symptoms prior. My Mom and sister stated I was having problems with a new computer system at work, having tremors in hands and arms, falls almost daily and paranoia. He diagnosed me with Autoimmune Encephalitis. He told them to start me on high doses of IV steroids and IVIG. I started to come out of my coma after 2 weeks.
My family was excited. After I was awake, I had an EEG performed and did not have a seizure they could see. I was sent to Cleveland Clinic and my parents were told I would sleep a lot to heal my brain. I have been told I slept for almost 2 yrs. My parents had to take care of me. After I became sick my husband really didn’t want anything to do with me, I’ve been told. When I came out of it and knew who I was he filed for divorce. And that’s alright. I’ve learned a lot about not only myself but others during this disease. That’s OK. Just made me stronger. I would not be here if it was not for God, my parents and my sister.
I started seeing Dr. Rae Grant at Cleveland Clinic and he is simply amazing! He makes me feel as if I matter and wants me to be able to return to work. He realizes that the disease is under recognized. He also stated that with Autoimmune Encephalitis, it’s common to have a negative spinal fluid since they haven’t discovered all the antibodies yet and he has seen other people have negative pet scans while sick. Both of my parents have autoimmune diseases in their families. My Granny died from Parkinson’s disease. My uncle at the age of 8 had a form of encephalitis but they called it “brain fever”. He had Parkinson’s disease. My uncle died from skin cancer he let go for too long and never let anyone check until it was too late. My grandmother’s mother was born with Huntington Chorea. My grandmother did not have children that got the disease, but all their aunts and uncles and cousins developed it. My Grandfather died from Alzheimer’s disease. Dr. Grant and I seem to think the autoimmune diseases I have in the family are how I developed autoimmune encephalitis.
I just want to help others with this this disease and let them know that they can go on. They can make it. They can have support from others just like I have. I wouldn’t be here without it. I had to learn to accept help and know there wasn’t anything wrong if I needed to write myself post-it notes all over the house! I learned to accept it. I learned there’s nothing wrong with learning a few new things to help me get by.
I just want to help others know there’s nothing wrong with learning how to like the new you. I had to learn how to. It has taken me 4 years and I’m still learning. I’m 40 now and my parents bought me a one-story older house on my brother’s property that is literally a minute a way. I love to get in my car and go visit.
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