Here's a good article on PLS from a reputable source, not dumbed down. It explains a bit about upper motor neuron diseases vs. lower motor neuron.
I'm still waiting for my doctor and neurologist to call me back and I left them both messages with their staff. My doctor is out today and I said I was not happy with her laying this diagnosis on me and assuring me I could call for help and that we would expedite MRIs and any other tests to be this week and then not getting back to me for 2 days and not setting anything up! FFS.
I am not really convinced yet that we are not looking at MS or something else. Also I note that PLS is not only incredibly rare but it can unpredictably turn into ALS and might just be the slow form or on the same continuum. From all this reading I realize it is complicated and will be a while till they are certain of diagnosis. But I'd like to get other tests rolling to confirm or rule out.
One thing that does not quite seem to go with PLS is that I didn't just plateau -- I was extremely disabled and then got *better* to a large extent. That patterns seems a bit more like MS.
I realized today that I had not really told the neurologist about the 3+ weeks of visual problems and migraine-like symptoms that I had a few years ago, December 03. It was funny cause I thought at first it was flu though it was like nothing ever before. The thing making me barf was very extreme vertigo.
And again here the next year in Feb. 04 with the weird "optical aura" and pain and here in March 03 and in january 04 with a doctor saying "Maybe you should see a neurologist" but not actually referring me... more and I forgot that they cat scanned my head in 04 and ugh the ER doctor.
Well, my dr. is still out and so is the neuro and in theory they will call me back tomorrow.