Replying to @kunda04's post:
I am also a 41 year old male recently diagnosed - and am going through my second round of IVIg right now. I have very little use of my right hand, and some of my left. About a week after treatment (2g/kg given over 5 days), I noticed some slight improvement in my ability to open my left hand, and got a little strength back. While I was a bit disappointed at not getting more back - I really wasn't appreciating the benefits until they started going away after 4-5 weeks. As Twitchy said, everyone has the symptoms to varying degrees and responds to the treatments differently. I am hoping for more improvement, but not counting on it. At the very least, there is evidence supporting a slow down of the progression with IVIg, so I'd be happy with that alone.
Getting used to loss of use is difficult, in my experience. At the beginning, there are so many things I came across that were "new" things to adapt to. As time went on, I found less and less of the new things, and my brain/body had adapted to its new abilities - requiring no thought to perform tasks. I experience loss in step-wise fashion, meaning it's not gradual, but rather I lose a chunk at a time. This requires relearning, and for me - some depression, frustration, etc., but gets better over time. There's no way around it - losing the use of one's hands sucks. I try to maintain a positive attitude and concentrate on being grateful for what I have. But, I also tell people it's hard to be grateful you have your leg when your foot has just been lopped off. I'll look at ALS and remember I've got the better of the two. And, remember that while i may have to tape a spoon to my hand someday; one there's time for research developments, and two that I'll be around to use the spoon.
Best of luck to both of you.
