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Mom Died of ALS/Should I Get Tested?

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chrismaya

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I have some very difficult moments thinking I have ALS at times. It does not consume my life, but it affects my life. My mom passed away from ALS. I'm thinking of trying out how to become tested to see if I have a genetic defect for the disease (SOD1?) Has anyone done this, and what do you think?
 

joelc

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If it was me I would not get tested. What will be will be and I would get on with my life and put the possibility of ALS out of my mind. There is nothing you can do if you test positive so why worry yourself. Also, just because you test positive does not mean you will get ALS so all that worrying will have ruined your life for nothing.

Just my 2 cents
 

chrismaya

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But what if I test negative? Ya know?
 

joelc

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That is a chance I would not be willing to take.
I could, and would, ignore it and put it out of my mind.
Not everyone would be able to do this and I recognize that.

You have a tough decision to make.
 

chrismaya

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Thank you, Joel. I just don't know what's worse: Living with a husband and four children WONDERING, or just getting tested and seeing what I may or may not be dealing with. Thanks.
 

BarryG

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It is not a tough decision at all, if there is no other family history of ALS then there is no reason to get tested. Do you have real symptoms that would lead you to believe that you have ALS?
 

nishant

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Jan 24, 2009
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09/2007
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Don't get tested, what if it comes +ve? It will be devastating for you. I too worry if my 4 year old will get it but I really don't want to get tested because it will kill me instantly.
 

thelma313

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When ALS is familial it seems to affect many members of the family so if you don't know of any past relatives who had ALS there is absolutely no reason to suspect it is familial. Ask anyone who has it in their family. They can usually name several relatives who had it.

I agree with the consensus, don't get tested, especially if you can't name at least 2 other relatives who had ALS and try not to worry. I know that's easier said than done but for your kids' sake it's important.
 

Zaphoon

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I like what the others have said and for what it's worth, here's my 2 cents.

If you are having neurological troubles that warrant a visit to the neurologist - see one! Let the doctor advise on whether or not a test would even be warranted. ALS is rare and familial ALS even more so.

Zaphoon
 

Twinsmom

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Not to be redundant, BUT...I agree with the members who have posted so far. If your mom's ALS was familial, you would have others in your family with it. AND, even if it is...then what? Are you going to stop your life?...not enjoy your husband and 4 children?

Since you know the realities of this disease, having seen your mom, you are blessed with the awareness that every day matters...live your life as though you KNOW that, and you'll be full of blessings.

Peace,
Melody
 

halfin

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PALS
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08/2009
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It is very important to understand the limitations of ALS genetic testing. At this time, testing cannot rule out genetic ALS. The most common test only looks for mutations in one particular gene called SOD1. But the problem is that even among people with genetic ALS, only 20% have the bad SOD1 gene. That means that even if you test negative, it doesn't mean you are free of genetic risk. The test can't really ease your mind as you would hope.

It is different in cases where the relative with ALS is still alive. They can be tested, and if they test positive for SOD1 then it is known to be genetic. Then others in the family can be tested, and if they test negative then they know they are OK. I believe a few people here have had this kind of result, but it is pretty rare.

Familial ALS is only 10% of all cases so chances are you are OK anyway.
 

irismarie

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Nov 21, 2009
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1,384
Reason
PALS
Diagnosis
05/2010
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FR
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tarn et garonne
Just in case there is any doubt, I throw my vote on the "do not do it" side. Living and not knowing is the normal state of affairs. Go on like that. I bet far more of us here have the non familial kind and I am sure we none of us want to think of our children feeling as you do... Please try to forget it if there were no other family members who died from it.
 

Al

Legendary member
Joined
May 25, 2004
Messages
7,960
Reason
PALS
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10/2003
Country
CA
State
On
If your mom died of a heart attack, would you go out and get tests done on your heart. I think not. I know it's not quite the same but if there are no other issues I'd not bother. Better to be happy and live each day to the fullest.

AL.
 

cris

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12/2006
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illinois
You're probably tired of hearing it but... you should try to put it out of your mind and enjoy your family each and every day! I know the unknown is scary . But the tests could give a false postive. Rest it in God's hands. He will deal w/ it and your fears!
 

Pidge

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Sep 12, 2009
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Diagnosis
08/2009
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Ohio
It is up to you to get tested or not but I will tell you why we have decided to have my son tested & then we will go from there. My father became very ill after having minor sugery he had a spinal block the hospital sent him home w/ my mother & he never walked again. His whole adult life he had a weakening in his legs & back he was eventally Dx w/ MND of an unknown origin & that was it.The Drs told
us there was nothing be done. It wasn't until we started learning about ALS did it click w/ me my father had similar symptoms & eventally passed away because he refused a feeding tube. When all this dawned on me I can't tell you what I felt to think that my Dad possably had ALS & was never Dx correctly some people in our Fam. thought he was faking although I never didyou can't fake that. The Dr said it is unusaully for it to skip a Generation meaning me I am not worried about it at all & will not get tested but It also impacts the rest of our Family & they may want to know my brothers at this time do not seem interested If it turns out that my dad had ALS & we would have known earlier we would have picked up on things sooner we had 1 year of limbo waundering what was going on with my son & also did things we would not have had we known. I feel like I am rambeling now I hope this makes sence trying to wrap up 15 yrs. of info in as few of words as possable. Speaking of words why does the computer keep eating my letters when I try to go back & fix somthing this is driving me crazy anyone else have that prob. Pidge
 
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