Do I have neuropathy? Something is waking me up at night

I've had nothing medical to say for a long time, and now... this.

Over the past two months I've been woken up in the middle of the night by a weird sensation. It feels like I bumped my elbow super hard, but instead of the sensation being in the elbow it is everywhere. And only on the right side. And this sensation makes it hard for me to stay still. I am jumping out of my skin.

The sensation runs from my right elbow to the tips of my fingers and up to my shoulder. From there the sensation moves to my stomach/ribs and my toes. If this sensation didn't feel the way it does (like the ulnar nerve pain associated with an elbow injury) I would think it was a seizure. As such, my seizures have never felt this way before.

The fact that this sensation is isolated in only the right half of my body suggests the pain/weirdness is neurological in nature. My brain tumor is on the left side and my seizures and other funky neurological malfunctions impact the right side of my body.

Roughly three months ago I had a weird day. I felt like my right foot was numb and tingle-y to the point of insanity. I called my new neuro-oncologist and he said if I continued feeling this way I should come in for an exam.

It's weird. When I feel odd sensations I am worried. Is it a seizure? Am I having a stroke? Is my tumor growing? But as soon as I talk to a doctor and they express concern for me, my own worries subside and I tell them it is no big deal and I am probably over-reacting.

Fortunately, I already have an MRI and appointment scheduled with my neuro-oncologist on Tuesday. My doc and I communicated via email and he is going to give me a complete neurological exam. I can look forward testing the strength on both sides of my body, smiling with my teeth showing, and following my doc's fingers with my eyes. (If you've ever had a neurological exam then you know what I am talking about.)

I don't think I am nervous about this exam. But I am nervous about what is waking me up at night. After much research, Dr. Internet is telling me I am experiencing neuropathy. However, if this is a true neuropathy, why is it relegated to only one side of my body?

It is that question which leads me to think there is something wrong with my brain. And the funny thing is, is that we already know something is wrong with my brain.

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
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