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Karrieanne

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May 31, 2006
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PALS
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State
WI
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Milwaukee
Hi Everyone!

I am very new to this whole forum thing but I thought it might help me. My mom died of ALS in 2000. I am terrified of getting this disease. I am 27 and I am pretty sure I am imaging all of my symptoms (I also suffer from generalized anxiety disorder). I have muscle twitches all over but mostly only when I am thinking about it and I have convinced myself that the muscle in the palm of my right hand is smaller than the one on the left. I am going crazy! Does anyone else have these fears? What are my chances of getting this horrible disease? My mom is the only one in the family that has every had it. Thanks for your help!
 
Hi Karrieanne,

Familial ALS, that is the form inherited, is only 5-10% of all the cases. The vast majority, 90-95%, are sporadic. So the chances of you having ALS as a result of your mom having it are very, very slim. I see you say that no one else in your family has had it. If that's the case then your mom had the sporadic strain, so try not to concern yourself with it.

Here's hoping you find peace of mind!
Cheers!
 
Thanks Mike 27. That does make me feel much better. If you dont mind me asking, how are you affected by ALS?
 
Honestly, I try not to let it affect me. I mean, yes I'm in a wheelchair and yes, I don't speak very clear, but I've accepted ALS as a part of me. That is not to say that I'm in denial of this disease, I just choose to not focus all of my attention on it.

Before I had ALS I could do perhaps 10,000 different things. Now I can do, maybe 7,000 (on a good day!:-D ) I choose to focus on the things I can still do rather than the 3,000 things I can't.

I used to be very materialistic, job driven and a tad egocentric. Now I've been humbled. I have new priorities, including my family and my spirituality. So, in a weird way, my getting ALS may have been a blessing!

I guess ALS has had an affect on me afterall.

Cheers!
 
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