ALS goes back 3 generations, my mom, grandma & greatgrandfather...

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Amgalvin3

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May 9, 2012
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5
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Lost a loved one
Country
Uni
State
MI
City
Livonia
I am SO nervous, my grandmother was diagnosed on Sept 10 2001 (an unhappy distraction to the next day, I must say) & was given 6-12 months. She died Sept 1st 2002. HER grandfather passed of als as best she could remember (the signs & symptoms) but after that she entered into orphanage so she's not sure about anyone else. Her mother died of hyperthyroidism, so it's not sufficient to guess if she'd have had it or not. My mother is in the process of being diagnosed, which brings me here.

I was the one who lived with my grandmother the last 7 months of her life & took care of her. I moved out just a few weeks before she passed, which I found out she decided to stop eating & drinking once my mom & I were not there, (I had just settled into a new home, & my parents were up north, because she knew we wouldn't just let her go like other family members would).

ANYWAYS, my grandmother got the tests done, & her final gift to our family was a fib--she said BOTH tests they ran to see if it was familial or not were 'inconclusive'

I know she did that to keep us from worry, as we now know it WAS, indeed, familial, & found out the notion that it could be 'inconclusive' isn't really too possible, she didn't LIE, she just didn't want to burden us with the truth.

Now, I have family members saying to NOT get tested, because insurance won't cover me later if I'm found to have the defective gene. That it would then be considered a 'pre exsisting condition'

Is that accurate? I REALLY want to know! Any help would be appreciated! Thanks! & bless you all who HAVE been diagnosed. I know first hand the picnic it's NOT. Stay strong! <3 :?:
 
Re: Als goes back 3 generations, my mom, grandma & greatgrandfather...

Hi
I am very sorry for what you are going through.
Not all genes that cause FALS have been identified and fewer were found when your grandmother was diagnosed so they very well may not have found a gene for your grandmother. It is possible that they won't for your mom also.
It is a hard question whether to be tested especially as there is nothing you can do to prevent ALS. I am not sure about the insurance question. It would certainly be an issue if you wanted long term care insurance. I think the laws may vary where you are about whether a positive gene test alone is a pre existing condition fr health insurance but the laws could also change in the future.
We are also a FALS family. My sister has ALS we are waiting for results of her genetic testing. I don't know if I will be tested if the gene is one of the identifiable ones. I am going to participate in a study at U Mass of FALS family you might want to look into that too.
Good luck. This is a tough road but the people here are wonderful
 
Re: Als goes back 3 generations, my mom, grandma & greatgrandfather...

I would go out today and buy disability insurance and or long term care insurance and a big life insurance policy. none of that is bad to have if you do not have ALS gene, and will be invaluable if you do.
 
Re: Als goes back 3 generations, my mom, grandma & greatgrandfather...

Barbie, I believe you are right. And Knowing what I do now and if I was in this position I would not be tested because there is nothing they can do to stop you from getting it and I believe it will affect the insurance.
 
Re: Als goes back 3 generations, my mom, grandma & greatgrandfather...

I did NOT think of purchasing Life Ins now, to avoid being denied later...thank you SO much, with everything on my mind right now, that's something important! THANK you SOO much!
 
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