- CASE FILE
Severe weakness, sometimes completely unable to walk. Pain in legs. Occasional convulsions, shakes, poor sleep quality and time.
ABOUT THIS CASE FILE
Weakness and inability to walk started 30 years ago, occasionally. Would last 6 weeks or so, recur several monts or a couple years later. Neurologist had no explanation.
1995, weakness turned chronic, and I used a wheelchair for several months. Legs were affected but not upper body strength. Diagnosed with fibromyalgia at that time .
December 2016, turned more severe and permanent. Current neurologist referred me to other specialists, no diagnosis. Sometimes I shake so bad I cannot cut up my food or use a computer mouse. Weakness can be severe enough that I crawl around the house. Any exertion (to bathroom or kitchen), I need to rest a couple hours. Sometimes I get excruciating pain in my legs. Sometimes after even mild exertion I start having convulsions. They seem to start on the left side of my abdomen. I am hypersensitive, with hyperflexible joints. I use a mobility scooter as I do not consistently have upper body strength to maneuver a wheelchair.
I work full time except when I have bad flareups. I do not always know what triggers those. Last one, I lost almost an entire week of work. I drive to work, 50 miles each way.
Multiple MRIs, exams, blood tests. A couple lesions show on brain scans, unchanged for over a decade. MRIs of brain, neck, spine, thighs. Other than the lesions, every single test is normal.
Have not slept well in decades. Sleep study in clinic, no sleep apnea. Only diagnosis, insomnia. If I do not get enough sleep, I am foggy and unsteady the next morning. I need at least 9 hours of "sleep."