My journey began in 2003 during the holiday season. I was working ridiculously long hours, so when I began feeling fatigued and dizzy I just attributed it to working too much. My vision became kind of blurry/fuzzy in my left eye with occasional stabbing pain and a blind spot. I began experiencing numbness on my left side and a strange tingling sensation that went down the back of my neck.
My job was demanding, and I told myself that I would go see my doctor as soon as work slowed down a bit, but my symptoms persisted and the exhaustion was like nothing I had ever experienced. I finally got into the doctor, who immediately referred me to a neurologist after stating his belief that I had a type of MS.
The MRI of my brain showed four spots on T2, and the Neurologist said I had possible MS, but would need further testing. After several months, some of my symptoms subsided and I moved to California with my job. My symptoms flared again in 2005 and again I was put through the gamut of tests, only to be told that there was not enough "spots" to meet the criteria to give a definite diagnosis.
Feeling very frustrated, I've lived with symptoms coming and going since then. During flare ups, I experience most of the original symptoms and sometimes there are new ones, but I've found that some symptoms are always there. I don't always feel them as bad at times, and I'm thankful for that.
After about six Neurologists, I finally have a new one who has decided to treat me for non-diagnostic, recurring episodes of MS related symptoms. My last MRI showed several T2 spots, but still does not meet the McDonald criteria for MS. My symptoms now include deforming spasms in my hands and feet, speech difficulty, cognitive problems, and what I've been told is a MS hug. I was told by my last Neurologist that all of these problems can occur in perfectly healthy people and that it was all quite possibly psychogenic. Really??? He will no longer get my money, that's for sure.
I am thankful today for the Indiana Chapter of the National MS Society and my new Neurologist. Both are helping to guide me through this unknown journey. More than that, I am thankful for my supportive family who love me even on my worst days. Remember, when someone asks, "Who is driving this bus?" Be sure to say, "I am!" You know your body better than anyone; find someone who will listen.
Stay strong as the journey continues. ~V