- CASE FILE
22 year old female suffering from worsening neurological symptoms starting in early childhood.
ABOUT THIS CASE FILE
I have Ehlers danlos syndrome hypermobility type, Postural orthostatic tachycardia syndrome, & Gastroparesis. Through this journey, there has been one thing that consistently gets pushed to the sideline by doctors, neurological/neuromuscular symptoms. I had mild developmental delays as a child, I struggled with fine motor. Learning was very difficult, whether that be learning math or learning how to skip, my brain struggled to pick up new information. Fatigue came into the picture around the age of 6, I would fall asleep trying to do school work and when playing outside with my friends I would always have to come in long before them. I was diagnosed with Chronic fatigue syndrome at the age of 17, at a point in my life where I would wake up at noon and be exhausted and need a nap 2 hours later. Around the age of 7, I had episodes where I would freeze, I could hear what was going on around me but for 30 or so seconds I was stuck unable to talk or move. This only occurred twice that I can recall. I started wearing glasses at 7 years old, my vision has progressively gotten worse ever since. The vision in my left eye will never be fully corrected with glasses. Around the age of 10 I developed tics, these have never been investigated. Clenching my throat, neck jerking, spitting, etc. Around the age of 10, my memory started declining, I enjoyed reciting bible verses at church but I was no longer able to remember the verses I once learned or re-learn them. I watch a TV show at the same time every week, but can never recall the time it comes on. I forget what I'm saying in conversation. I lose my phone even when I just sat it down a few moments before. Around the age of 12, my muscles started getting weak and shaky. Physical therapy said I had Hypotonia (low muscle tone]. I've recently noticed my left side seems to be weaker than the right, including Ptosis [Drooping eye lid] that only affects the left eye. I saw a neurologist 3 years ago but he was unable to provide answers as his focus is headaches. I had an MRI, was told it was clear. I tried to get a copy of the MRI for a second opinion from a larger hospital, but they fought me on it and I still haven't been able to get my hands on a copy. I do have headaches and migraines but I can manage them, both of my parents have Chronic Migraines. The most recent thing I've noticed is trouble with balancing/coordination. If someone leans into me I tend to fall over. I can't judge the space between things if I try to step over something on the floor I will step on it, for the same reason I run into walls. I'm scheduled for a hearing test because of Tinnitus (ringing ears] and I always have to ask people to repeat themselves. My stomach is delayed because my brain doesn't send the proper signals, last year I had a gastric stimulator inserted to help my stomach function. My primary care physician is sending me to another neurologist. I've been a little worried recently because I can look at my timeline and see the progression.