First a small brief background, since late December I've had intermittent loss of feeling, sensation and function of my right hand from the middle finger to the pinky. In late January it became constant. So before the next round of surgery, which was to originally to be in February and include work on the right shoulder again, my docs agreed that a nerve study was in order.
My EMG came back as abnormal. No big surprise as i don't have function or feeling in half my hand and can barely lift the arm that it's attached to. The surprise came when they tested the left arm as a baseline and it's results were even worse than those from the right, in spite of no loss of function. The EMG test was immediately expanded to increase neck and back muscle groupings and leg muscles. I felt like Bart and Homer at the leoparcy treatment laser needle hut.
After confirming that there's a diminished and slowed nerve response everywhere orders were given for a cervical and cranial MRI. Though I've become more than accustomed to having imaging performed, as this was my 9th MRI alone within the past 30 months, this was the first one that I feared the results of as I've been painfully aware of the slowly decreasing limb function over the past 2-3 months, poor balance, occurrences of acid reflux (which had previously never occurred), all in spite of my best efforts to stay loose and active in the pool and to do what I can manage for core muscle groups. I was expecting a giant death sentence of a mass to have developed.
Upon initial review of the imaging nothing was found. I was relieved and was told to come in to meet with my neurologist (another doc, 13 now) and primary together the next afternoon.
I head into the appointment upbeat, there was no terminal mass sealing my fate. It hadn't crossed my mind that we didn't have an answer for the abnormal EMGs, deterioring physical function or other issues. If ignorance is bliss, I was on cloud 9. I come into the office 15 minutes before my appointment and sign in, the receptionist, who knows me well by this point, tells me that they're ready for me and that I can come back. I'm briefly a taken back. It's never good when they're ready and waiting for you, nor when meeting with 2 docs together. I was expecting this to be a good news day, no mass right? I sit down.
What do you know about amyotrophic lateral sclerosis?
The world stops.
This is not happening. I have not been in this battle with difficult odds to be blindsided by one with a single outcome. My wife doesn't deserve this, my mother doesn't deserve this, and my father, an ALS patient for the past 6 years doesn't deserve this.
The first step after receiving an ALS diagnosis is to get a second opinion, then a third, and a 4th as needed, as there's no definitive test to prove the diagnosis, only ways to rule out other causes. Thankfully my 2nd opinion didn't take long, though it felt like an eternity.
It's amazing the amount of self damage that you can manage when you think that you're at the end. Though drinking 2 growlers worth of craft beer over a weekend might not sound like a heroin filled bender or even a crazy night filled with tequila, to someone who has been on a remarkably restricted diet and who just 4 months prior had over 40% of their liver removed, it's equivalent to picking up an eightball for the weekend and it being gone before 10pm Friday night. On a related note, Full Tilt brewing's amber ale is pretty damn fantastic, nice color, great depth with moderate sweetness and floral notes they play nicely off a balanced hoppiness with a slight touch of malt that comes to a remarkably clean finish. It's what the overly malted Fat Tire fans think that they're drinking. (I've missed beer, but won't be repeating that weekend).
Monday afternoon my orthopedic calls, having looked at my imaging, and asks, "what's the plan regarding your 3 herniated discs". My what?!?
Yup. That happened. Everyone else was looking for the biggest most damning this as possible as well that a group of causes slipped through. To answer my Ortho, I've been sleeping upright due to all the other issues since June. Time for some custom pillows, as opposed to being propped up on the end of the sofa. Also adding in some neck work to the pool routine and stretching 4x a day.
Good news is pre-op for the surgery that was to be back in February is now slated for Thursday. I'm back in the game!
I was really expecting to have a 323 giveaway thread on here before the week was out. Basically to whomever would have the ability and resources to finish it in a timely fashion, who would rallycross it, bonus points if they'd get it to the challenge and preferably in a timely fashion regarding it's completion. But I'm happy to say, that thread has been put on hold.
That rollercoaster left me relieved, exhausted and possibly wanting another beer (don't worry, I won't be partaking in this round).
