In 2001, I gradually lost movement on the right side of my body. That spring I remember the guys I worked with giving me a hard time about not using my right hand. I’m left naturally left handed, so I didn’t think anything of it.
In November, when I went home to the Chicago area for my sister’s wedding, my family could tell something was seriously wrong. My friends in Phoenix, who saw me almost every day, were too close to notice the changes. My symptoms came on that slowly.
Of course, I knew that I was sliding, that something was wrong. When my family asked about it, I assumed it was just my dystonia acting up. I thought that I could work my way through it with exercise.
Just before Christmas, I started getting headaches. Bad headaches. And no matter what I took (aspirin, ibuprofen, tylenol), I just could not shake them.
During these headaches, I also had brief moments of euphoria. Fifteen minutes or so of absolute bliss during excruciating pain. I’m still not sure what the euphoric episodes were. I can only assume now that they were mini-seizures. But that is pure assumption on my part. No doctor has ever told me what they were.
On January 2nd, 2002, I had three of those euphoric episodes back to back to back. I knew that that couldn’t be good. I called my friend Nancē. Nancē had been telling me since the headaches started to let her know when I was ready to go to the hospital. Hell, if it had been up to her, I’d have gone to the ER the second I stepped off the plane from Chicago.
Fast forward 12+ years.
I started getting headaches again a couple months ago. They weren’t bad. But they were almost always there. After a few weeks I made an appointed with my primary care physician. Knowing my history, he ordered an MRI.
And guess what…
The tumor is back!
I saw the neurologist who did the biopsy twelve years ago, and he wasn’t in any hurry to do anything. I have another MRI scheduled for November to check the tumor’s progress.
I haven’t lost any movement yet. (I touch my right thumb to each fingertip every night before bed, just to be sure.) But the headaches are starting to get worse. Nowhere near what they were twelve years ago, but worse nonetheless. And I had a euphoric episode the other day.
I’ve seen my PCP a couple times, and he, in conjunction with the neurologist who treats my dystonia symptoms, has me on meds that are managing the headaches. I have an appointment with the dystonia neurologist scheduled for this Tuesday, July 22nd. It’s a month earlier than my usual 3 month appointment. We’ll see how it goes.
So, that’s what’s going on in my life.
How’re you doing?