Is it familial ALS?

[themichi001]

Hey everyboody, I hope you've a good day.

I'm from Vienna so please excuse some spelling mistakes.

It's about 1 month ago when my grandfather was diagnosed with ALS at about 79 years. His neurologist said it is an exclusion diagnosis because he can't pronounce a word and it might be bulbar ALS. 1 year ago he had no problems in speaking, so we believe he aquired ALS at about 78,5 years. His mother died with 78 years and his father with 86 years. Both his parents don't seem to have died of something in relation to ALS. His sister is 88yrs and doesn't have ALS until now.

My dad (53yrs) has two siblings (51, 46) and they are all healthy.

The reason why I'm posting is that I've fasciculations in both calves. It started when I was watching TV and I've it without any break for a week now. I don't feel weak when I'm going upstairs or so. I read on some sites that fasciculations might be the first symptom of ALS. So I'm a mental wrack for more than a week now. Can you provide me any help? Would you think it's possible that ALS is in our family even though no one else suffers from it till now?? I'm 24 years old and very scared. I just want to have my life back... :?

I hope you can help me and thank you very much in advance!!
Best Regards from Vienna,
Michael

 

[Nikki J]

This thread was moved because there is no indication of FALS. Read the sticky for this section and see what we say about twitches.

If your grandfather has ALS in his late 70s even if there were reason to fear FALS ( there is not) it would not affect you at 24. Young onset FALS is a distinct type

 

[themichi001]

Thank your for your urgent reply Nikki J!

So you think it is not ALS because of late age of onset or why? Thank you very much in advance! It is so helpful to get reasurance from someone who really know how (f)ALS works, because my family isn't a help. They just tell me that I'm searching for things to be worried.

 

[Nikki J]

I think you don't have ALS symptoms. There is zero reason to suspect FALS. I merely meant that IF you were a FALS family which you are not you would not see one case of 78 and one of 24. The type of FALS that affects 24 yos starts young in all family members. Your family is likely correct

 

[themichi001]

Thank you!
I'm just concerned because I came across a site where some study said that it might be possible to become 80 without showing any symptoms. If his parents or he just developed symptoms so slowly or penetrance is low?
Or is this in your opinion not possible?
The only fact is that fALS age of onset is lowe than sALS but can I then say an 78yrs old is likely to be sporadic?
Another question! Is there any correlation between inherited ALS and bulbar progression?
Thank you very much

 

[Nikki J]

Bulbar is generally faster progression ( not always but usually). Faster when older too. You can't draw any conclusions re FALS/ SALS

It is not a realistic scenario to think there is a low penetrant form of FALS that never manifested before that struck your grandfather at 78 ( yes the older one is the greater the risk of SALS) and you at 24. Please review my comment about young onset FALS being a distinct type. Stop reading about FALS and taking snippets of information and twisting them into wildly improbable / impossible scenarios to feed your fears.

Concentrate on loving your grandfather and helping him and your family.

Closing this thread. Do not start another