Do you have familial ALS? Or know of a family?

Status
Not open for further replies.

LornaDoone

Distinguished member
Joined
Apr 16, 2010
Messages
215
Reason
Loved one DX
Diagnosis
09/2007
Country
CA
State
BC
City
Lower Mainland
I am looking for information on how cases of ALS start in familial cases.

Does the progression mostly start in the same locations?

We have a new family member that I suspect may have it and am looking for information on familial cases.
 
i have no idea Lorna, but i just wanted to say that i am sorry about your suspisions of the new family member.
 
I don't know about the presentation, but I do know that the als doc we see at the alsa clinic said it has to be passed from parent to child. Since neither of my husband's parents have als, we are under the assumption that he is a sporadic case. I don't know if this is what you were asking, but I just found this out last week. Thought I'd share in case you didn't know that. I hope it's something besides als in this relative!
 
I have familial ALS- presenting very similar to my mother with limb onset. The difference is that my right leg is more affected, my mom started with her left leg. From the stories I've heard regarding my grandfather, he also stated with lower limb involvement. Hope that helps. Sorry to hear your family has been affected by this disease.
 
I have FALS. It started in my right foot, ankle and leg. It is also where my mother's started. On my first visit to the hospital I met with the head of neurology. After asking several questions, and a physical examination, he said the syptoms fit FALS because they start in the lower limbs. He's well respected in his field here in Mexico, England, and other countries so I guess he's correct! Hope this helps!
 
Thought you may be interested in the professional response:

I asked the ALS specialist at our last appointment. She said that cases within the same family, even ones with a genetic component, can present drastically differently. Most ALS cases present with limb onset she said, regardless of whether they have a genetic relation. Many people misinterpret this in familial cases as all familial cases will present the same. Not true at all.
 
Familial runs in my family. Symptoms: I am not sure what they experienced first. My dad died at 67 and my older sister at 59.
 
my sister displayed slurred speech and upper body strength and drastic weight loss from being afraid to choke on food.
 
Status
Not open for further replies.
Back
Top