Welcome! This is the first post on Neurillogical, my blog about my unpredictable, painful, and so far generally undiagnosed neurological issues. I started this blog to have a place to write down my experiences and feelings, but also to vent, and to share my story with others that might have similar issues.
My pain started in my legs at first, way back in 2000 or 2001. I don’t really remember for sure. It sort of snuck up on me, gradually worsening until I finally was in so much pain at night trying to sleep that I had to see my doctor. Back then, the pain was worst while lying down. My legs would feel like ants were swarming among the fibers of my muscles, and I gradually started to have more and more trouble sleeping as the pain worsened. I haven’t had a solid night of sleep since before this.
I moved to Tennessee with my wife (from California) in 2002, and my first appointment with my primary care physician is recorded in my medical records. The very first sentence is something to the effect of “Patient complains of frequent severe leg pain.” A “just to give it a name” diagnosis of fibromyalgia was applied.
In 2010 or 2011, I suddenly developed terrible, sharp pain that felt like it was deep inside my left ear. After ruling out ear infection, orthodontic problems, migraine, and a number of other issues, the diagnosis was finally trigeminal neuralgia. Not long after that, the pain migrated down into the left side of my neck, and it stayed there for a very long time, despite having a discectomy to correct a minor nerve root compression problem.
Things continued to slowly, steadily worsen. I developed tremors in my arms, and sometimes I would have spasms that would cause an arm, or a leg, or sometimes even my entire body to lurch. At times, I would be working at my desk, using my mouse, and would uncontrollably lift the mouse from my mousepad and slam it back down again.
Then the electric shock sensations started. The feeling that I was being blasted by electric current randomly around my body. Mostly in my arms, sometimes in my legs or face. Those continued to worsen, along with the spasms and uncontrolled movements.
After that came the numbness and tingling. I can no longer feel many of my toes at all, and the entire area below the knee is always numb at best, with some areas extremely so. Everything from my lower back down to there is at least in pins-and-needles territory most of the time, and sometimes it’s even worse.
More and more symptoms crop up, and more and more specialists are stumped. It’s crazy.
We have never successfully diagnosed my condition. It keeps changing, and it is definitely steadily worsening. The pain moves around my body, sometimes in my legs, sometimes in my neck and shoulders, sometimes in my face.
I’m miserable from the pain a lot of the time. I do my best to fake otherwise though, because I don’t want my daughter to know just how bad it is. She’s aware I have pain problems, and that as far as we know they don’t mean anything serious is wrong beside nerves acting out of line, but she doesn’t really know just how much of the time I feel it, and just how bad it is.
My wife and daughter give me a reason to keep fighting for answers.
Anyway, that’s a quick overview. I’ll be talking about various specific incidents, issues, and problems over time in future posts.