Diagnosis Confusion

[Bujy]

Ok so my MIL has been diagnosed with familial ALS. She says it's a super rare variety. Her progression is very slow and her sister's progression was very slow as well. Her sister passed away from cancer and not difficulties with ALS.

I'm not sure what they say life expectancy is, but I dont really care about that. Rules are made to be broken!

Anyways, anybody familiar with this time of ALS? Does it have a name?

Thanks.

 

[hopingforcure]

You sound like such a caring DIL. That is to be admired and applauded. I hope that we can see her break all the rules, others on here like Joel C, and Quadbliss, Granpa Al, will long break the life rules. We will be here for whatever may come your way..

 

[Bujy]

Thanks for the kind words!

So, I'm looking for types of familial ALS. I'm googling, but not getting what I'm looking for.

I'm looking for a name for the type of ALS that's familial and slow moving. Limb onset. Is there even a name distinction?

 

[lydia]

I think you might get more responses on the general discussion forum or the one for people with ALS, or even the caregiver forum. I have heard some (or one) of the familial forms of ALS defined by a particular gene....but don't know any particulars. Good luck! Once you get that name you can google to your heart's content.

 

[olly]

hi,sorry about your mil.
familial als as far as i know involves sod gene,there are many different types of this gene(sod1,2 etc)i did have a chart on the sod gene and types/prognosis,i'll see if i can find it.
she could ask her neuro which sod gene is responsible or have a genetic test to find out.
but really her continued slow progression is what your focus should be on.

 

[jimmybob]

ALS is categorized as either familial (inherited, 10% of ALS) or sporatic (no family history, 90% of ALS). Regardless of category of ALS, there is no way of predicting the rate of progression or what areas of the body will be affected most, or in what order. Everyone with ALS is affected differently. Concentrate on taking care of the needs as they arise and don't worry about what will happen next, or for how long.