I had just graduated with my Bachelor of Science in Psychology a few weeks before, it had been a struggle those last few classes. I was having difficulty writing papers and forming coherent complete sentences. When I was working on my practicum and interviewing patients I would become dizzy and have a difficult time focusing on them. Sometimes I wondered who should be lying in this bed, me or them. But, I had a great brother and sister who could read my papers and knew exactly what I was thinking and they would edit them and fix my work. My mom would do a final read through because each error would reduce my grade. I passed the class with flying colors. It was just stress, or so I thought. I walked with my class received and received my degree, now the real stress would begin.
After a nice bridal shower for my sister-in-law in May 2006 I started a 2 hour drive home. I was really tired but once I got home I had a burst of energy. As I was reading I told my husband that I felt weird and that the letters in my book were moving. That is about the last thing I remember clearly. I vaguely remember him yelling at me, caring me up the stairs and hearing someone yell, “it’s Jerold’s wife” (we lived in a very rural community were everyone knows everyone). I remember being so tired and my whole body hurting from shaking so much and it never stopping. The next day I was transferred to a hospital “up north” that had more medical technology. My stay there was a waste of time, they basically sent me home several days later after my seizures had stopped and told me that it was “all in my head” and that “I must have been abused as a child and have been suppressing it and it is all coming to a head”. I was furious and demanded another psychological evaluation but was denied and was told that if that was not the cause than it had to be stress.
My health continued to decline to the point that my primary care physician was at a loss and was having me see specialists “up north”, they included a neurologist, hematologist, and endocrinologist. Because my health made it so I was unable to drive my husband would have to take days off of work because we would have to travel. This became a financial burden. I ended up having to move in with my parents and being cared by them just shy of a year. My mom would take me to my appointments. I would see my husband ever weekend because he would come and visit and we would talk on the phone every night.
My seizures left me to the point where I could barely walk, talk, read, and write. I worked with a physical therapist at the hearing and balance center that helped me learn how to walk again. Because my balance was compromised I had to learn how to walk with only using the sense of seeing and touch, and not always the sense of touch because of the numbness in my feet come and go. My eyes do not track back and forth correctly so I had to learn how to read again without causing a seizure. I have eye exercises and special techniques to trick my eyes. My right hand became so weak that it did not want to write, it was also hard to get the words to my hand to write. So I had to keep practicing writing and typing for that part of communication. I also lost a lot of words; I found that reading and playing games such as scrabble has helped me with my vocabulary again.
After a constant battle and not getting anywhere and finally finding a team of doctors that I liked and who acknowledged that there was actually something wrong with me and that it was not all in my head, I was able to return home. The doctors treated the symptoms for years; however, they still did not know what they were treating. I had several surgeries for other medical problems but nothing ever “cured” me.
Finally in March 2010 my prayers were answered, I called my neurologist because I could not move my head to the right. They wanted me to come in right away. Upon examination they said that they needed me to have another MRI, it had been 6 months since the last one, so I agreed. I did the MRI, and was called back to come to the office immediately. They told me that I needed to have a lumbar puncture. I told them that I had one in 2007 and it came back negative. They said that my MRI had changed and that they now saw a lesion on my neck (there had always been lesions on my brain that they watched). I underwent a lumbar puncture within a couple of days and a month later, YES a month later (there was a shortage on the testing agent) I got the results on accident by my eye doctor that I had MS. I immediately called my neurologist when I got home from the neuro-opthamologist and they confirmed my diagnosis.
I look back and I see many places where I fell through the cracks and could have been diagnosed sooner. But I am so happy that I was diagnosed and that my neurologist acted and got me treatment right away.
Now I am so blessed to be part of the MS family.