I am Ashley Chernikovich

It started in 2018 when I was 23, affecting my right dominant hand. I was a college graduate at the time seeking employment for a year. My legs were affected with cramps and minor twitching which gave me heavy/stiff limbs that would follow.

I was still pretty functional for another year, which allowed me to keep employed. But my balance was getting wobbly and eventually got an oversensitive gag reflex which strained/slurred my speech. Right foot drop followed.

Initially, my symptoms/signs were overlooked as carpal tunnel and even misdiagnosed as MMN for quite some time, as IVIG seemed to be helping until I continued worsening i.e. overactive reflexes, atrophy in both hands causing fingers to curl and wrist drop from inflammation, right shoulder wasting and overall twitching + weakness.

I worked until I couldn’t and I would be so worked up about things from trying to understand what was happening to me and what that would mean for me. I had student loans and bills to pay and had been living with my friend who has her own struggles with RSD/CRPS.

I was diagnosed in September 2020 and now depend on a walker and wheelchair. I almost fully depend on my mom to take care of me. I have progressed in my neck, knees and hips, which causes muscle aches and pains. I fatigue from standing too long and struggle to get up from a. seated position, other than that I’m fairly stable and doing ok. I struggle most using my hands/arms. I have no known genetic cause.