Sharon,
After reading your last post, I am very glad to know that you have an appointment with an ALS clinic. You will get a definite yes or no regarding ALS, at the very least. If it turns out your husband does have ALS, the clinic has the tools to educate and equip you regarding changes as they occur. If it turns out not to be ALS, well, you've heard it from the experts.
I think it was a bit brazen for your neuro to tell you there is no need to go to the clinic because you may hear what you don't want to hear. I think he can't tell you what you need to hear - a correct diagnosis. It seems to me he can't seem to face the fact that he can't give you a definite answer.
You have it right, regarding the not knowing aspect of things. With me, the clinic I went to was stymied but the VA neuro didn't hesitate to make the call of PLS for me. In one respect, it does help putting a tag on things but at least in my mind, I'm still hoping for something else.
I just received the notes from my last neuro visit: hyperreflexic with bilateral lower extremity triple flexion responses; unchanged tightness and minimal fasciculations in calves; biparetic gait, slightly greater on the left; orbicularis myokymia on the left; there may be a little atrophy in the flexor carpi radialis mid forearm.
I think its chicken pox. A week or two and it will all be gone, except the memory...
Zaphoon