New Member, Read Stickies, 2 Family Members with ALS

[SZcat]

Hello to the kind answerers.

I've read as much as I can of the stickies and advice as I can. I have some questions about ALS in the context of my significant other (SO) and I provide the family background of why I am here, as I wouldn't be here without the familial ALS.

Background: my SO and I have been together for 4 years.

His brother has had ALS for over 15 years, seemingly in remission of sorts, as he takes Rilutek (not sure I spelt that correctly). Seems some sort of cancer brought on the ALS. He's doing well and has certainly taken part in many studies. One wouldn't know he has ALS without looking at his hands.

2 years ago my S/O's father was also diagnosed with ALS, (shortly after surgery) and the same drug hasn't had the same results. His progression is alarming.

I too hate this disease and what its done to one family. With the possible genetic link, my SO has avoided surgeries (where he can in case he too develops ALS). Are there links to some sort of trauma bringing on ALS? Are we overreacting?

Recently we noticed my S/O legs are different in size, quite significantly so. We cannot determine if they have always been that way. We don't know if one leg is smaller or larger than the other. No muscle weakness, no clumsiness. From reading the other posts it would seem odd to have wasting without weakness. Regardless, due to the family history his PCP has recommended an EMG appt with his neurologist.

This has us both frightened, and of course we don't want to upset the family any further, everyone has enough to deal with.

Does any one have any thoughts? I know we have to wait and see what the EMG says, but in the meantime, I wondered if you had any insight or advice.

Without any genetic testing, are his odds 50-50 like I think they are?

Are their other symptoms we should be looking for?

Kind Regards
SZcat.

 

[Nikki J]

I hope you and your SO get good news from the neuro.
I am from a FALS family and yes if there is a genetic defect your SO has a 50 percent chance of having inheritied it from his dad.
Have either affected relatives had genetic testing? there have recently been several genes newly identified (including c9orf72 our family gene which is supposed to be the most common cause of genetic als)
Good luck to both of you!

 

[HelenL]

I wish I had some answers for you, but don't know much about FALS... I do think that ALS is triggered by something, in my case I had a weird virus. Some people have had major surgeries, and then get diagnosed later on, so it's questionable if they needed the surgery to begin with, or if the surgery triggered it... good luck, and keep us posted.

 

[SZcat]

Re: 2 Family Members with ALS; one passed today 9/11

Sadly my S/O's father passed a little while ago this afternoon.

Expected, yes, ready no.
Peaceful, yes.

At least the flags will always fly at half mast on the day he died. 9/11.

I keep thinking how hard it is for members to type on this board, and how sad this disease makes us all.

 

[notme]

Hello

If there was no OTHER member in his family with ALS, there is no reason to think its the genetic form 90%of ALS is sporadic, meaning no known cause.

Theories abound. There is genetic testing available for both of you. I'm wondering, though, that if your brother has no issues other than his hands if he wasn't perhaps misdiagnosed?

I'm sorry for your loss. Your SO can be tested for the genetic marker, but know that if there is no true weakness in that smaller leg, it's probably just always been smaller.

Good luck to you.