For the last several months, I’ve been having new neurological symptoms.

◦ Weakness in my limbs

◦ Numbness in my fingers and toes

◦ Flashes of light in my vision

◦ A couple of near falls

◦ Tremors in my left hand; my pinky is constantly twitching and my thumb is occasionally twitching.

◦ My grip strength is weak. I keep dropping my toothbrush.

I went to the ER about 10 days ago when I couldn’t lift my arms. They felt like lead. I was worried I had Guillain-Barré syndrome. They discharged me with no diagnosis. The doc didn’t think it was GBS.

I saw a new neurologist today who ordered a slew of tests. I have to have an EMG and a lot of bloodwork. She did a pinprick test and I have noticeable numbness in all of my toes and fingers.

When I was in the ICU after my stroke, I developed secondary hydrocephalus. I had an external ventricular drain (EVD) placed before I had my permanent shunt placed. They drilled a hole in the top of my head to put the EVD in. You can see the drain in the picture.

The neurologist looked at my past MRI results and said I have tissue damage from the EVD. The tissue damage presents as encephalomalacia on the imaging. She thinks this damage is causing my symptoms now.

Now? All these years later? How can this be? I’m just flummoxed. But, that’s what I’ve been dealing with.

There’s nothing anyone can do. The neuropathy is likely to get worse. It will progress up my feet and legs and up my hands and arms. What presents now as an inability to hold my toothbrush will get worse.

Eventually, I won’t be able to feel the gas/brake pedals on the car. I will likely lose the ability to type at some point.

How long? No one knows. How long can I keep working? Who knows.

I feel doomed. In this day and age, when everything is so ungodly expensive, how the hell am I going to support my family if I can’t work? I type ALL DAY LONG.

I have been getting angry a lot lately. Angry that this happened to me. Angry that I survived this thing only to have a hundred side effects because of it.

Everything feels fucking impossible right now.