[Mandy]

I’ve been diagnosed with probable PLS. I’ve been having symptoms for months (likely years), but most notably since about March. It was mostly weakness and left foot drop that I was experiencing at first, but just in the last couple of weeks I’ve started to get localized twitching, in my buttocks and my left upper arm. Those are the only places. Early on I do remember a few nights of what felt like restless leg syndrome. And then I had a night where I can only describe it as an electrical storm in my left ankle. The next day I could no longer voluntarily move it. (I.e. I can no longer walk on my heel on my left foot.) I seem to get a little electricity (or maybe they were twitches and I just didn’t know how to describe them) before that body part stops working. I will say, it does make me nervous that I have UMND ALS or just straight ALS. I haven’t had an EMG yet because I’m waiting to do that with my second opinion at an academic hospital. That appointment is in a couple of weeks. My first neurologist didn’t want to do it because in his words, “They’ll want to do it again at the academic hospital and it will only exclude ALS, so I don’t want to put you through it twice.” Now I wish he had just because it has been a nightmare trying to get an appointment! It’s been months. Ugh. Sorry…totally got off topic ?

[Mandy]

Yep! Every year. One year I forgot and got the actual flu. I never want the full-blown flu ever again. I was in so much pain. That was a few years ago. Now that I have PLS, I definitely don’t need it!