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gawel

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May 5, 2010
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10
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Loved one DX
Country
PL
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Mazowieckie
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Warszawa
Hello. I wrote on this forum once but i hope that you won't kill me that I'm back with it again... Soon after I wrote there about my story, I found the results of the ALS risk studies, and now almost everything is against my "calming down" :/ Sorry for my English, I'm Polish...

One again...

My great grandmother had a disease, that starts from leg paraplegia, then she became totally paralized and die at the age of 30... She was undiagnozed, because in Poland (i'm Polish) medical care in 1940. (that's when she died). Are there any other likely other ilness other than ALS that could manifest in that way? She was the only child.

I know that her parents weren't affected, but her father at the age of 52.

She had two daughters, one of them is my grandmother. She is know 79 and she is healthy. Also her sister is healthy (75 years old). My mother is 50 and is also healthy. She is the only child too, and I'm the only child - 21 years old.

These studies shows, that, the risk of the als among relatives of younger indyviduals with als is much much more higher than in older indyviduals. So now I'm terrible frightened, and I'm thinking all the time, that I will inherit the disease.

If there is someone who can help me cope with these thoughs, please, help...
 
*but her father died at the age of 52.
 
It could have been many things other than ALS.

You can't go through your life worrying that you might inherit some kind of disease. Please put it out of your mind and start living.
 
I imagine that Poland was not a really healthy place to be in 1940 and like Joel said there are many things that it could have been. And even if it was ALS (which it likely wasn't) that is only one person in your family which gives you no more likelihood of getting ALS than anyone else.

Relax and go watch some football or something.
 
You would know of more cases if it was fals..imo
 
In 1940's Europe polio would be more likely than ALS.

AL.
 
Thank you for the support... Really, it means a lot to me. To Al - I think that it wasn's polio, because she was suffering from that about 3 years. But it's true, that it could be something else. I have a problem with it, because i can't talk about it to my mother, i don't want her to know that things that I was reading about (i have muscle twitches, 99% caused by stress, because they appeared a day after i have read about a disease). But I'm still frightened, i hope that i will find a way to cope with it one day... I have a wonderful life and I'm so angry of myself that I made myself to me such a devasting thing... If I wasnt searching - I would know nothing and I could be peacefull... I know that you are batteling with the disease, and you stay positive, and my problem sound silly... I hope that when I will get some disease I will live my life to the end, without giving up. But you know, that mind is a really powerfull thing, and sometimes we cant controll it. I think myself "the chances are small, you are the third generation, you wont inherit it" Soon after there is a second thougt - You are a men so you are more likely to develop the disease, your grandma was really young at the diagnosis, so it was propably genetic, it can be diminished penetrance, and more more more. And I have this thoughts almost everyday for a 4 months... It's really devasting... And I can't cope with this... I'm batteling with my own mind. I hate myself for what I'm doing, but I just can't stop it....
 
Hey dear, the mind is a very powerful thing. You can control it, You can do it. Just keep telling yourself that, over and over. ALS is rare, FALS is even more rare, make that your mantra. You can do this! HUGS Lori
 
Lori, believe me I'm trying to do that, all the time... My biggest problem is that I don't know my chances. I know that nobody knows it, but everything that I've read is against me. If it is true that in younger ALS patients there are more familial cases - there will be about 50% of cases or even more. Am i wright or not? If not, please tell me that... And... If someone read my first post... The relative risk among young onset patients for 1st degree relatives is not much higher, I wrote it wrong, It's about 3 times bigger that in general ALS probands, so it is still very small. These is only my overinterpretation, so don't panic, as I do :/ And in this study family history was not taken from the probands, so it can be, that among "first cases in the family" the risk isn't even bigger. But please, if you can tell me something, that you know, and that can help me ease my fears, do it. Please... I can only ask You for understanding. And I'm sorry for doing it... Greetings from Poland... Thank you all. You are wonderful people...
 
To get familial ALS you inherit from a parent if your parents do not carry the gene you will not get it. It does not skip a generation and then manifest in the next. It's a dominant gene and if your parent has it you have a 50% chance of getting it or not. The only way it could skip a generation is if someone died before the disease developed/ was diagnosed. It sounds unlikely that you have FALS in your family.

Dee
 
Gawel- I think if this were a case of familial ALS, you would have seen other members of your family get sick like this. My brother-in-law has the gene for the familial form and there were several relatives on his mother's side who had the disease-- an aunt, uncle, cousins, his own mom.

do you have any extended family-- siblings, cousins, etc.? has anyone else in your family tree had a disease like this? I am not a geneticist or medical professional of any kind, but I would think that you should be reassured if there is no one else among your relatives who had ALS.

Plus, you are only 21 and the likelihood of you having ALS at that age is exceedingly small.

good luck-

Sandra
 
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