- CASE FILE
In under a year I digressed to a quadriplegic & couldn't care for my twins. Loss of mobility & ability to eat coupled with chronic pain.
ABOUT THIS CASE FILE
I am seeking help for myself and others like me. I want to participate in my children’s lives.
In less than a year, I went from being athletic and caring for my toddler twins to not being able to walk, stand or even sit. I lost use of my limbs, my ability to eat and have suffered in chronic pain with no useful diagnoses to help. I lost the capacity to care for or to even hold my children. My doctors tried many unsuccessful treatments, from chemotherapy, steroids, Intravenous Immunoglobulin, Plasma Exchange, gastric tubes, catheters, Botox, narcotics, pacemaker, etc. Nothing helped and doctors couldn’t find a diagnosis. I have been near death many times over the last decade. My muscles and bones have atrophied leading to multiple broken bones simply from being placed in bed. I’m desperate for an accurate diagnosis and treatment that can give me hope to participate in my now teenage twins’ lives. I want to hold my children. My most recent diagnosis is of two rare diseases: Stiff Person Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy. I’ve been misdiagnosed multiple times before. Please help me.