First, as I have posted so many times before, ALS is a rare disease and PLS is the rare of rare.
An initial PLS diagnosis supposedly does not indicate a dysfunction/damage of the Lower Motor Neurons… so often written. PLS is an Upper Motor Neuron dysfunction. You can read all the articles about PLS then end up not sure of what you thought you knew, or are experiencing or have read an hour earlier. Some articles say the presence of hyper reflexes, clonus is an indicator of PLS, then you read another study will say the lack of reflexes could also be an indicator.
The most reliable indicators of PLS are the Babinski and Hoffman tests.
Ok HowDoug, you asked about how others have experienced PLS… my experience started eight years ago + with a weak left leg and a limp. My wife’s Ortho doctor during one of her visits ask me off hand why I was limping and I just casually said my left leg was weak. He suggested I see him. Making a long story short… after two appointments with him he felt I may have Chiari Malformation Syndrome and referred me to a Brain and Spine Specialist. Well, then he referred me to a Neurologist and I can’t count the number of appointments I went through with him over years. Then, I got the confirmed diagnosis, diagnostic code and then they set me up for appointments at the ALS Clinic.
Ok, wrote all that to say this concerning PLS eventually becoming ALS as others have posted… possibly. OK, I quit asking questions (and Google) a few years ago, maybe being in denial of all this but (but) … I’m beginning to wonder if they (the Neuros) know something they aren’t telling me (and maybe because I’m not asking). I’ve learned I did not have a clean EMG last time but it was not a positive indicator of ALS. I have all the indications of “Split Hand Syndrome” which is/was once considered an early indicator of ALS. I’ve lost 50 pounds (from 239). I’ve gone from a cane to a wheel walker with brakes which I fought as hard as I could. I am at max oral dosage of Baclofen and fortunately no side effects. I’ve read many people who go to ALS clinic go once every six months… I’ve been rescheduled for just two months after my last clinic.
This Forum is a good thing to share your experiences and read the experiences of others but… no one (that we may know of) posting here is a Neurologist. I know some Neuros read this Forum in their spare time (maybe yours too!) But, there are some very knowledgeable Moderators and members here who can share great info with you
So, welcome to the most controversial of MNDs... PLS. Hope to read more of your posts