Als Progression

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Hi Howdy. I am the first one in my family with ALS. Brother and sister (older) have had cancer in last 2 years but dad is 92 and still lives on his own. 5 other siblings have no big medical problems. The family I am referring to in the post above is a friends that I met a few years ago through the ALS Society.
AL.
 
Gary,

I believe you are correct that you have a 50/50 chance of inheriting the gene.
 
Howdy said:
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

It is very unusual, but not impossible, for familial ALS to show up in a non-autosomal dominant manner. Sometimes, of course, people with familial ALS die before the disease presents so it's possible that your relatives didn't live long enough to develop ALS. Can you follow your family tree back for several generations of people who have lived long lives?

As for the SOD1 gene, the likelihood is that you don't have it-only 20% of FALS do. The rest have another ALS gene that has not yet been identified. Of course it's also conceivable that you and your brother both have sporadic ALS but if, indeed, a third brother has the disease that is very, very unlikely.
 
Meg1, We have checked back in our family on both Mom and Dad's side for several generations and no one had ALS or anything like it. Most all of them lived to be 70 to 90 years old. Dad had 10 brothers or sisters and Mom had 5. Several of them had several kids. Mom sister had 15, so you see I have several cousins on both sides of the family. I'm 68 and there is probably about 70 some 1st cousins some a little older and some a little younger then I am. That not counting the Hundreds of 2nd and 3rd cousins. There hasn't been anyone of them have any signs of having ALS. My sister is 67 and she is ok, just the three of us brothers. Hereditary or not I don't know, but I don't think in our case that it is. I know that you don't like supplements but that is the only thing that has slowed my progress down. In 2004 I was progressing so fast that I could feel my body changing every day. I started on supplements and change my diet . I started to feel better after 2-3 months. I'm stronger now then I was then. I don't trip or get dizzy like I was then and I haven't lost any weight in over 2 1/2 years. The muscle spasm are only about 10% of what they were in 2004. My right hand, arm, neck and shoulder have Atrophy, but I can still use them. The Atrophy hasn't gotten any worse since 2004. The fatigue is 90% less then it was in 2004. I still work part time and farm a 165 acre farm. I thank God for every day I can still walk, because I told my wife in 2004 that if I didn't do something that I would be in a wheel chair in 6 months or less. I was getting so weak that I had trouble walking 300 feet. I now walk about 1/4 mile down hill to feed my goats and back up with out any trouble. I built a 18x24 foot addition on to one of my barns 3 months ago and nailed the roof on my self. In 2004 I couldn't climb a ladder with out getting dizzy. What I have done may not help anyone else but it sure helped me. May God bless all. Howdy
 
John1 said:
Gary,

I believe you are correct that you have a 50/50 chance of inheriting the gene.

That's what I was kind of afraid of. I never really thought I could get ALS just because my dad did, but after experiencing the symptoms I have been experiencing, I went online to see what came up, sure enough ALS. I haven't been diagnosed yet because the clinic can't see me until the middle of April, so I won't know anything until then. I may not have it still, but I won't be totally surprised if I do. If I do, I'm glad to know you all are here to get support from.

Thanks John.
 
GWB said:
That's what I was kind of afraid of. I never really thought I could get ALS just because my dad did, but after experiencing the symptoms I have been experiencing, I went online to see what came up, sure enough ALS. I haven't been diagnosed yet because the clinic can't see me until the middle of April, so I won't know anything until then. I may not have it still, but I won't be totally surprised if I do. If I do, I'm glad to know you all are here to get support from.

Thanks John.

Having a single relative with ALS is only a very weak indication of familial ALS. If your father is the only person in his direct line that has had the disease, his illness is more likely sporadic.
 
Howdy said:
Meg1, We have checked back in our family on both Mom and Dad's side for several generations and no one had ALS or anything like it. Most all of them lived to be 70 to 90 years old. Dad had 10 brothers or sisters and Mom had 5. Several of them had several kids. Mom sister had 15, so you see I have several cousins on both sides of the family. I'm 68 and there is probably about 70 some 1st cousins some a little older and some a little younger then I am. That not counting the Hundreds of 2nd and 3rd cousins. There hasn't been anyone of them have any signs of having ALS. My sister is 67 and she is ok, just the three of us brothers. Hereditary or not I don't know, but I don't think in our case that it is. I know that you don't like supplements but that is the only thing that has slowed my progress down. In 2004 I was progressing so fast that I could feel my body changing every day. I started on supplements and change my diet . I started to feel better after 2-3 months. I'm stronger now then I was then. I don't trip or get dizzy like I was then and I haven't lost any weight in over 2 1/2 years. The muscle spasm are only about 10% of what they were in 2004. My right hand, arm, neck and shoulder have Atrophy, but I can still use them. The Atrophy hasn't gotten any worse since 2004. The fatigue is 90% less then it was in 2004. I still work part time and farm a 165 acre farm. I thank God for every day I can still walk, because I told my wife in 2004 that if I didn't do something that I would be in a wheel chair in 6 months or less. I was getting so weak that I had trouble walking 300 feet. I now walk about 1/4 mile down hill to feed my goats and back up with out any trouble. I built a 18x24 foot addition on to one of my barns 3 months ago and nailed the roof on my self. In 2004 I couldn't climb a ladder with out getting dizzy. What I have done may not help anyone else but it sure helped me. May God bless all. Howdy

Howdy, this is very interesting. I'm no genetics expert but I'd bet that if your family is the victim of a genetic mutation it has to have happened in one of your parents who either died before the gene expressed itself or, if your parents are both still alive, has just not come down with symptoms yet. The other possibilty is that your parents are both carriers of a rare recessive form of a familial ALS gene. This would produce the same inheritance pattern seen in diseases like cystic fibrosis where both parents must contribute an affected gene for a child to get it. Alternatively, your mother may carry a recessive x-linked gene, but if that's the case one would normally expect to see other males in her family affected. Have your doctors expressed any interest in your unusual family history?
 
Meg1, In 2001 when the Doctors at the ALS center Dx me with ALS they told me that I might have familial type because my younger brother had died with ALS in 2000. They said that they could do a DNA test and tell, but they never done the test. My other brother has been showing signs like he might have it for the last 1 1/2 years, but won't go get any testing done. The other fact that I might add is that my Mom and 1 of her sisters married Dad and 1 of his brothers. That makes us double cousins. They had 3 boys and 1 girl and there is 3 boys and 1 girl in our family. They haven't shown any signs of ALS in there family. Both my brothers worked for me when we remodeled a building on a military base, that had been use to store chemicals. My younger brother always said before he died that he though that is where he got his ALS. I never though any thing about it until I came down with it. I might add my other brother and I also married sisters. He almost 67 and I will be 69 on the 28th. May God bless all. Howdy
 
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