siblingALS

[2siblingsALS]

Until I was recently diagnosed with ALS I thought that my brother's diagnosis was sporadic. Surprise! Seven years later I got diagnosed, the month that he died, the same age. Talk about irony!
I haven't had any genetic testing yet. Didn't know anything about it until I got on the Forum.
I have wracked my brain but cannot think of any ancestor on either side who had anything remotely resembling ALS.
I have a lot of questions for when I finally see a specialist at the Univ. of So. Florida.
At least it stops with me. I couldn't have children and Tom was a bachelor.

 

[MaxEidswick]

only thing worse than ALS is FALS

 

[Atsugi]

Sorry to here about it. Keep us up to date. Will they check your genes to find which one it is?

 

[Nikki J]

Sometimes it does seem to spring out of nowhere. It seems as if you must have got your genetic defect ( presumed) from one of your parents. Sometimes if you look back you can get some hints like a relative who had creeping paralysis or wasting disease. Another thing they will likely ask is family history of dementia parkinsons like disease other neuro conditions. My defect c9 orf72 is the most common cause especially if you are of Northern European ancestry. It causes other things besides ALS dementia is the most common other thing but progressive supranuclear palsy which might be misdiagnosed as Parkinsons is another way it shows itself.
No children at risk is a good thing I guess. The children in our family are my biggest worry though I worry about my adult cousins too.
As I said there are supposed to be trials of gene specific treatments in the fairly near future so there may be practical benefit to knowing. Find out if your insurance covers it. The whole range of genes is horribly expensive. Sometimes even if you don't know they might test for the most likely one based on family history and your presentation. If you have to pay do ask