View Full Version : Anyone with Familial ALS?
sara06
08-14-2006, 08:47 PM
My family has SOD1 A4V. Does anyone here have this specific type of ALS? I believe there is only 300-600 people in the world with this kind. Pretty rare, we must all be related somehow. Just curious to know if anyone has it and if they may be related to any Bly's, or just can't trace their family tree.
donnainwash
11-29-2006, 02:01 PM
Hi, I am looking for more informa tion about familial. I saw your message. How did you get tested and know that your family has SODia4V. How many family members contacted it? I have not seen a specialist. My mother had it 18 years ago and it was very fast, she only lived 4 months after being diagnosed, mine is following the same but at a slower pace. thanks.:neutral:
sara06
11-29-2006, 03:35 PM
Hi Donna,
I am so sorry that you have this disease in your family as well. I don't have ALS, but my mother just passed from it a month ago yesterday. I have not been tested and I'm pretty sure that I don't want to... unless they find a cure or good treatment. My mother had a DNA test done at Northwestern University in Chicago. 2 of her cousins have ALS now. My grandfather, uncle and great uncle also passed from it. I don't know the details of the testing. I don't know if they maybe had some information from my uncle when he was diagnosed or a blood sample that they could go by, or if it was one of her cousins DR's that confirmed that all of them have the same gene. I don't know if you know this or not, but a certain percentage of people with FALS... I believe it is 80% have a random affected chromosome, and the other 20% have the same, they have found that ours is in the 21st chromosome. I hope that some of this helps.
alan911
11-30-2006, 06:30 PM
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
Hi alan. Welcome to the forum but sorry for your bad luck. If you could call it luck. I am the first in my family to have this and it scares the begeebers out of me that I may have passed this on to my children and grandchildren. I can relate to the different diagnosis though. I've had 4 myself and while they didn't give percentages they did waffle at times but now they all say yup you got it. Ain't life grand. AL.
