Als Progression

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Howdy

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Al, Do you know which type of Als progresses faster the Familial or the Sporadic. Howdy
 

Al

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I'm not sure if anyone has done any statistics on that. I have a friend with familial. I'll ask her. I do know that bulbar generally is the faster progression whether it is familial or sporadic.
AL.
 

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Got an email back from my friend. Guess it doesn't add much to what I thought.
AL, in regards to stats of familial and sporadic I have not heard of any either. I know with my form of familial ALS it seams to be moving slow but there are other types of familial that do move rather fast. Bulbar is usually the fastest with the average live expectancy to be somewhere between 3 months to 2 years. Sporadic to be an average of any where from 3 years to 10 depending on the way it moves from what I have seen and Familial from anywhere from 3 years to anything...I am in my 11th year and my father was diagnosed for over 17 when he passed away...so real stats I don't have any for you...sorry....
AL.
 
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ruby ben

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Progression

Hi guys - I am sorry but I am lacking in knowledge what you are talking about. What do you mean by "familiar" and "sporadic".
I understand that bulbar is faster than limbs but otherwise we are all different and progress at different rates. .....................ruby from vancouver (surrey)
 

John1

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ruby ben said:
Hi guys - I am sorry but I am lacking in knowledge what you are talking about. What do you mean by "familiar" and "sporadic".
I understand that bulbar is faster than limbs but otherwise we are all different and progress at different rates. .....................ruby from vancouver (surrey)

Hi Ruby,

Actually the term is "familial" and refers to ALS that is inherited. I believe about 5-10% of ALS cases are familial and the rest are sporadic; i.e. no genetic cause is known. The best known familal form is that carried by the SOD-1 gene but some other genes for familial ALS have been found recently.
 

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Sorry Ruby I missed the typo. It is familial we are talking about where different family members get ALS.
AL
 

ruby ben

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Thanks Al. I now know mine is "Sporadic limb onset". It is 4 1/2 yrs. and I have not been officially diagnosed. I only see the Dr. once a year so I am learning from this forum.............ruby from vancouver (surrey)
 

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SOD1 question

Al said:
Sorry Ruby I missed the typo. It is familial we are talking about where different family members get ALS.
AL

AL

Forgive me if this isn't the right place to ask, but if someone has the SOD1 gene, what percent of them actually get ALS?

Thanks!
Gary
 

Al

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Once again I don't think anyone has kept stats on this but I'll ask my friend if she knows anything about it. Get back to you.
AL.
 

Meg1

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GWB said:
AL

Forgive me if this isn't the right place to ask, but if someone has the SOD1 gene, what percent of them actually get ALS?

Thanks!
Gary

100% if they live long enough.
 

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Meg1 said:
100% if they live long enough.

Really? Surprising! Is there a website that has more information on this that you could refer me to?

Thanks!
Gary
 

Al

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Here is the scoop from someone living it. AL
AL as far as my family history goes my cousins were tested as well as my dads sister the ones who have the SOD1 have ALS and the others that were tested who did not carry the gene did not and were not going to pass it along either. In my case I have the SOD1 and my daughter has a 50/50 chance of getting ALS.

As far as everything I have read if you have the SOD1 you will have ALS. Its ok I don't mind the questions... Names taken out by myself to protect identities. AL.
 

Howdy

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SOD1 Gene

Al, How far back in your family has ALs occured. My brother died with ALS 7 years ago. I started showing signs about the time he died and now my other brother is showing signs like he may have it. He won't go and have it check out, I think he is afraid of finding out that he may have it. No one else in our family on Dad or Mom side has had it. I haven't been checked for the SOD1 gene. If we have the SOD1 gene it had to mutate in our generation. There has to be something to cause the mutation to start at some point. Howdy
 

GWB

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Al said:
Here is the scoop from someone living it. AL
AL as far as my family history goes my cousins were tested as well as my dads sister the ones who have the SOD1 have ALS and the others that were tested who did not carry the gene did not and were not going to pass it along either. In my case I have the SOD1 and my daughter has a 50/50 chance of getting ALS.

As far as everything I have read if you have the SOD1 you will have ALS. Its ok I don't mind the questions... Names taken out by myself to protect identities. AL.

So, let me see if I understand this correctly. My dad had ALS (he died from it 15 years ago), that means I have a 50/50 chance of getting it, is that correct? I am showing many of the symptoms of it (I'm 53) and have an appointment to get tested the middle of April. Wish I didn't have to wait that long, but that's the way it is. Thanks for your feedback.

Gary
 
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