My husband had symptoms for a long time, we thought it was his "back" and after his last surgery which was a triple fusion, he immediately had horriable leg pain. We saw two neuros here who suspected some type of MND but after hearing so many positive things about Cleveland Clinic we decided to go there. They did many of the same tests the first neuro did and observed him for about 18 months and would not label him as anything, all they would say was that it was not ALS. We decided that the "LABEL" was not as important as symptom control. After all, when you check these sites people with ALS and PLS all have so many symptoms and different rates of progression and I even saw one post where a woman went from finger twitching to total body breakdown in 14 months but was still labeled PLS due to "normal" EMG's. Made no sense to me. We have been doing follow up with a local neuro and it's been over three years now and they have finally started muttering PLS as of last year. When I think back, all the restless arms, back issues, pain in his legs, restless arms, these were probably all MND and we didn't know it, so who really knows how long this has been going on. Documented, we are on year 3. A friend of ours had ALS for 24 years. He never needed a vent and always had a voice, although garbled. When this all started he said the funniest thing, he said that if he got out a shovel and dug a grave everytime someone told him he was going to die he would have been able to plant a forest. He even outlived some of the most sympathetic "friends" who tried to help him deal with his illness. I guess my point is, it is what it is. Life sure is a kick isn't it? IT's not what you plan but how you deal with what comes up. We're trying. Some days we are better at it than others. As a spouse, I would rather have it myself than watch my loving adorable husband go through this. Hang tough people...hang tough.