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My sister and I have the same symptoms at the same time after my father was diagnosed

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mrluu55

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Hello everyone, I am from Vietnam.

My father 63 years old, was diagnosed ALS 4 months ago.

Unfortunately I (33) have symptoms same with my father: such as muscle twitching, feel weak and numb at left hand and leg for 2 months. I think about genetics and I had visited some hospital in Vietnam, the doctors said "he thought about FALS but it is need times to diagnose".

My sister (29) also have the symptoms. And we are waiting for a gene test.

I want to ask about: living and eating together is environment for disease active in persons who have the same mutation gene? (we live in the same house and eat together in the weekend). Or may the house's electromagnetic is cause of gene activation?

I want to know to protect our children by keep them away from the environment.

I am sorry for my English mistakes.
 

lgelb

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Hi, Luu, it would be very unusual for you and your sister to have the same fALS symptoms as your father, as you are much younger than his age of onset.

It is not contagious so living together does not matter, nor do we have any reason to believe that electromagnetic exposure would activate the gene. You either have it or you don't. I don't think you do, especially if you do not have others with ALS in your family.

I am sorry to hear about your father, and invite you to read and post here any time for support in his care, your sister, too.

Best,
Laurie
 

mrluu55

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Thank you Laurie. I also think it is unusual for me and my sister. But, the symptoms are real and the reviews of the neurologist are real. So I have to ask people who have experience on this forum. I have read that the disease can start early in later generations. I've been through the bad months and suffering from the symptoms but now I do not think for myself anymore. I'm just worried about the kids.
In Vietnam we have a habit of eating together. Can it spread the disease between people of the same mutant gene?
In my country, they do not seem to care about the disease because it is so rare and can not be cured. No support equipments were available, so I had to read a lot of articles on this forum to take care of my dad and prepare to take care of myself.
I need experience in prevention for other family members from fALS members. Please help me.
 

Nikki J

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Hi I am FALS. My mutation is C9orf72. Since it is believed to have originated in Northern Europe it would not be one that would be expected in your country.

You speak of what we call genetic anticipation- disease afflicting younger people each generation. The numbers I have heard are about 7 years younger per 2 generations

It is extremely rare for FALS to strike a parent and even one child simultaneously. 2 children simultaneously would be that much more rare. FALS is also mostly something we trace back through the generations. Arising suddenly without family history would also be rare. So you are reporting rarity upon rarity upon rarity if your premise is true

What is common though is for stressed family members to report symptoms like you mention- twitching and feeling weak

No there is no evidence that eating together or sharing food has any impact in developing FALS

There is no prevention for ALS now FALS or not. Smoking is a risk factor and so almost certainly is repetitive head trauma. Military service
 

NinaP

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Sorry but you got a diagnosis that said you are sick too? I dont get your post.
 

mrluu55

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the neurologist said "he thought about FALS but it is need times to diagnose". I have alot of symptoms indicating als even my EMG has not appeared abnormally. My symptoms are crawlng worm sensation , twitching everywhere but mainly in the limbs, pain and weakness in the muscles on the left.
 

Nikki J

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You are being followed by a neurologist. All we can tell you is that we see situations like yours a lot here and they turn out ok. You said someone was having genetic testing ( hopefully it is your dad) that will give you more information.

There is much hope for FALS ( which is far from confirmed in your family) so worrying about children is likely unnecessary. My neurologist tells me she think the kids in my family ( teens) will be fine

Good luck
 

mrluu55

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hello nikki, i am very thank you.
Could you please show me how to send private messages to you to ask some questions? Because I think my case is very similar to that of your family.
 

Nikki J

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You can’t send private messages ubtil you have quite a few posts. I do not think our situations are similar. I had multi relatives die of ALS. Just in my lifetime my mother and 3 of her siblings. They got it from their fatherThen my sister now me. As far as i read your dad has a diagnosis. At the same time you and your sister have symptoms that concern you. We have an identified mutation and my relatives did not get sick all at the same time.
 
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mrluu55

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Thank you Nikki,
I have read about retro virus. Can it spread in mutant partners? Patients and family members with the same mutant gene can be infected by kissing or sharing food. What do you think about this?
 

mrluu55

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I am very sorry but you said that the mutation rate is 50/50 but your family's statistics seem to be much larger than 50%.
 

Nikki J

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No ,mutant genes can only be passed on at conception. The viral issue is completely separate but not spread as you describe or in any way between people. It is a reactivation of a dormant issue. It is not proven as the cause of any ALS cases yet anyway. It is theoretical so far

My family has been very unlucky but each of us had an equal chance of inheriting a healthy gene. Like flipping a coin you can have a series of heads or tails. However if you count my cousins it looks like just under 50 percent for my generation

A study of 30 siblings and chlldren of FALS is reporting 14 positive tests which would be expected
 
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NinaP

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Nikki what viral issue are you guys talking about? I have asked several times if i was in danger of getting this since i was living and eating with mum, now that she died, my sisters and i we even shared some of her clothes to wear, since we didnt want to give them up and we wanted to have her near us so we kept some of her clothes. Are we in any danger?
 

lgelb

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Nina, you are not in any danger. ALS is not a contagious disease and as you know, there is no multi-member family history in your case, giving us no reason to suspect an inherited type. Nor, as Nikki notes, does FALS present in parents and their kids at the same time.
 

mrluu55

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Sorry I do not want to make people worried but my sister and I have the same symptoms as my father made me learn. On many documents proves that als can come from retrovirus. You can find many related articles in the following link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3723705/
I think we need to take a serious look at this issue to inform scientists and possibly resist the spread to our family members who have the same bloodlines.
I think Retrovirus spread like the way of HIV virus, they do not harm ordinary people but it works for people with the same genetic mutation. I really want to know to protect the kids. I have asked some geneticists but still have not answered satisfactorily.
 
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