Hi,
I've probably had symptoms of PLS since early 2000, although the concensus now seems to be that any symptoms I had at that time were masked by low back problems (I had an L3-S1 fusion - with all the hardware - in 2009). A year after the surgery, I persisted with pain and heaviness in both legs, was advised to see a neurologist, and was initially diagnosed with "progressive spastic paraparesis." I had all of the usual bloodwork (copper, iron, HTLV I and II, etc. etc.) as well as EMGs, CT myelogram with spinal tap -- all except for genetic testing (there is no apparent UMND in my family, so testing is probably less useful - although I'll never know for sure. I cannot have an MRI, because I have a spinal stimulator (I no longer use, but having it removed would just be another surgery, and that's a risk I'm not willing to accept).
Up to the last 6 months, the progression of my symptoms had largely been insidious -- slow (but variable) progression with some plateaus. But in the last several months, the leg weakness, spasticity, and balance problems have increased significantly. I can no longer walk without difficulty - the spasticity varies day by day, increasing noticeably with increased stress levels, cold weather (ugh!), sitting upright for too long, and walking (and all sorts of unknown other!). I have a neurological bladder, I choke at times, have increased tone in my arms (they hurt), and simple things like folding towels causes my muscles to fatigue quickly -- at which point I become short-of-breath (even typing this causes my forearms to ache). I have low back, neck, and shoulder, arm, foot, and hand spasms and cramping. In many ways, I often feel that my symptoms are more compatible with MS than they are with PLS.
But my progression has followed the textbooks pretty closely -- starting in both calves and working its way up. I can't specifically pinpoint when any of my symptoms started, to tell you the truth. But today, I can no longer differentiate the cause of pain that originates from PLS or pain that might be caused by something else instead. For example, the pain I occasionally have in my left arm and forearm would have most other 55 year-olds in the E.R. and on a heart monitor tout-de-suite. I imagine that many of us experience symptoms this way.
And while I'm not at all happy to admit this at all, PLS has changed me. I was once a profoundly Type-A individual -- always something to do and somewhere to go. And I know this might sound strange to some, but I've come to view the world and the people in it with a certain sense of awe: "They did WHAT? Ran 26.2 miles?" -- when, in fact, I've run this very distance myself several times in the past. As I've said many times before, guarding the well-being of the psyche is as critical in PLS as is the management of physical symptoms.
Mike