Information needed on Familial ALS

[Jane1234]

Hello,

I'm new and would like to thank you in advance for any information you can offer.

I've just become aware of the following information and am trying to determine what the chances are that we have a familial form of ALS in the family.

My paternal grandmother became ill at the age of 28 and passed away at 38. Her cause of death was listed as "Cachexia due to or a consequence of Myeloneuritis". I'm not sure if this was ALS or not. She had no full-blooded siblings and there is no information on her father or his family.

My father (her son) became ill at the age of 47 and was in the process of being diagnosed before he was suddenly killed in an automobile accident. I'm told they were leaning toward ALS but also looking into post-polio syndrome at the time of his passing. The disease was progressing rapidly. We were not close at all so I'm getting everything second hand. My father had no siblings.

My father had the genetic testing done that was available at the time and he did NOT have the SOD1 mutation. No other genes were tested.

Does anybody here have any information that may be useful to me in helping to determine whether this sounds like a familial gene running through our family?

Also, I am aware that it takes only one gene from either parent to get this and it would be a 50% chance. What would you recommend if you were in my shoes to maybe try to prevent this if possible? I am a female in my mid-30's with children.

Thanks again!

 

[trfogey]

Does anybody here have any information that may be useful to me in helping to determine whether this sounds like a familial gene running through our family?

The best website I've found for familial ALS news and information is the ALS Research Collaboration site at the University of Miami (als-research dot org), which is one of the leading fALS research centers in the US.

Also, I am aware that it takes only one gene from either parent to get this and it would be a 50% chance. What would you recommend if you were in my shoes to maybe try to prevent this if possible? I am a female in my mid-30's with children.

What exactly are you trying to prevent? Getting the disease yourself? Passing along the disease to your children? Preventing your children from getting the disease if your family is a fALS family and they (and you) carry the dominant gene?

Just curious -- do you think you are currently symptomatic with ALS? Do you have siblings (full or half, via your father) that are showing neurological symptoms?

 

[Jane1234]

The best website I've found for familial ALS news and information is the ALS Research Collaboration site at the University of Miami (als-research dot org), which is one of the leading fALS research centers in the US.

Thank you for that.


What exactly are you trying to prevent? Getting the disease yourself? Passing along the disease to your children? Preventing your children from getting the disease if your family is a fALS family and they (and you) carry the dominant gene?

I'm wondering if it is possible to try prevent getting it myself or my children getting it by any type of lifestyle change? For example, would you recommend removing the mercury fillings, taking Vitamin E, etc. I realize if I have a bad gene, my children each have a 50% chance of having the gene too.

Just curious -- do you think you are currently symptomatic with ALS? Do you have siblings (full or half, via your father) that are showing neurological symptoms?

No but we are relatively young. One 1/2 sibling. We've never even had a positive ALS diagnosis that I'm aware of.

 

[trfogey]

Jane1234,

Since we don't know what causes ALS or know very much about treating it, it kind of goes without saying that we don't know anything definitive about preventing it either. ALS/MND is found in many countries with all sorts of lifestyles found among its victims. Victims are mostly middle-aged or elderly, but there are distinctive cohorts in younger age groups -- men who've served in the military, athletes, etc. -- that serve to confuse the puzzle even further.

You've asked one of the (presently) unanswerable questions about ALS. I'm sorry that I can't help you more.