Familial ALS
I'm the 4th in our blood line; a great aunt, an uncle, my brother, and me. No blood tests were done on the others. I asked Kaiser to run mine (takes several months), and I've made arrangements for tissue samples when I die. If mine is familial, it means I had ALS at conception. What a legacy to pass on to MY kids, and their kids.
Diagnosing ALS was a problem, or I made it a problem. I had falling-down-itis, went to see a neurologist, and after extensive testing he said he was 100% sure I did NOT have ALS. Six months later, a different neurologist, after two days of shock testing, said he was 100% sure I DID have ALS. Went for a 3rd opinion at a university hospital; the neurologist said ALS was only 40% likely. Two years later, I can't walk, have nearly no use of my arms, and the 4th neurologist says ALS is 80% likely. But only a post mortem will confirm it. (Oh yes, I had two more days of shock tests -- EMG).
I don't know if the swallowing, choking and breathing problems have occurred because I was told to expect them, or if they naturally have come along without my help.
When my brother went through ALS, I read anything and everything, but was devastated when he died. Now I'm there, and I appreciate THIS forum resource, but I know I have to get that darned 800 pound gorilla out of my tent and only if you've seen the gorilla do you know how hard that is.
This post doesn't have a question attached to it. My question is for God.
Alan