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KS080395

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Feb 11, 2011
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Loved one DX
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TN
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Clarksville
I am looking for a general question about ALS and I knew this was the place to come. I have been a visitor to this site for a few years off and on...and have always talked myself out of posting to the forum for fear of being bashed for asking about symptoms..even though I have probably memorized the Sticky about if you think you may have ALS.
ANYWAY, I am 39 years old. My mother died in 1995 of ALS. Every muscle twitch,cramp,weakness and soreness I feel causes anxiety. Our family is not large, my mother did not have brothers or sisters but no one in my grandmother's family or grandfather's family (that we know of) ever died of ALS or anything that would have been similar and not diagnosed.
So, my question...could my mother be the first to have the heredity ALS in which I could inherit this disease?
 
Not likely, sounds completely sporadic to me.. You most likely have the same worry as any other person, really random. I do not think anyone would mind someon like you, who has ALS as a unfortunate part of life, but I would relax about it being genetic.
As my dear mother used to tell me.. DONT BUY TROUBLE.. And she was correct, nothing that worrying ever did that has helped anyone. Take that from a worry-wart, who should have listened to my wise mom..
 
If there was just one case of ALS in your family, why are you scared? With FALS, it runs through the families with usually bit earliest onset (I can remember the poor teenager whose mother died of ALS in 25 and her daughter in 17, incredibly sad).
You have no reason to worry. Every patient with ALS has family so everyone could ask this. Fortunately, FALS is quite rare, about 10 out of 100 cases of ALS:
 
I would not allow this fear to consume you. The odds are extremly remote. When I was diagnosed I asked my Dr. that since I had ZERO family history of the disease did I need to concern myself with the possibility of my children becoming FALS even though mine was sporadice. His response was absolutely not. That put my mind at ease allow it to put your mind at ease as well.
 
Thank you all for reassurance. It was so very difficult watching my mother suffer through this disease when I was so young at the time.
 
There is one genetic test you can do to see if you have one of the gene abnormalities that cause familial ALS. Note that there are a few known gene abnormalities that could be connected to ALS, but only one can be currently tested for.

My Pals had this genetic testing done when she was first diagnosed. Our situation is different with lots of ALS in the family. But, it is an option for you. Keep in mind that in the US, this type of genetic testing can impact future insurance applications and even travel in some instances. So weigh the potential consequences carefully before taking part in genetic testing.
 
KS,

What you are feeling is hardly surprising. I think that survivors all have a certain degree of post traumatic stress after watching a loved one suffering.

When I began my family, I knew that there was a likelihood that any son I gave birth to would have Duchenne's muscular dystrophy like my brother had had. The primitive testing that I had before my daughter's birth was later found to be worthless. It was late into my second pregnancy when I found out that the testing was no indicator of whether any son I had would have MD or not. I almost cried when the doctor announced that my second baby was a boy. Not a day passed when I didn't look at my son and wonder if his life would be a repeat of my brother's. It wasn't until he was 5 years old that I breathed a sigh of relief.

Before my daughter decided to have children, I went to have genetic testing so that she wouldn't have to. If I turned out to not be a carrier then she couldn't be one. Unfortunately, the test was inconclusive. Early in each of her pregnancies, she was sent to have amniocentesis to determine the sex of the fetus so she could be prepared to make choices that no mother wants to make. Both pregnancies resulted in boys. Two wonderful precious boys who we couldn't live without. For 5 years I have secretly watched every stage of development waiting for the first sign of the disease reappearing in the family. Not panicking but acknowledging that for that day everything was OK. This year my neurologist told me to stop watching the 5 year old as he was beyond the point where this would begin. So now I have only one little boy to watch and within a year and a half I can stop and celebrate how fortunate I may be.

I can't imagine anyone not wondering about the future when the past has been very painful. I guess the best way to live is to concentrate on the joy of the moment because nothing is ever guaranteed in this life. Be kind to yourself and seek the help of a counselor. I certainly wish that as a child my distress had been seen and counseling sought.

Thinking of you,
ND
 
ND,
Thank you so much for sharing. I know I should always be thankful for the day I am given and I try so hard to be. It is so much easier when I don't have those typical symptoms that my mother experienced in the beginning of her illness. I try to tell myself that I am getting older (39ha!) and my body will ache at times. But then, I can remember that my mother (who was diagnosed at 45) would say the same thing before she knew what she was dealing with. She thought her body aches and muscle twitching were just age/stress. It is also difficult because while she was so ill, we never once considered the heriditary aspect of the disease. At this point, I can't even remember if we knew that ALS was genetic. She passed away in 1995 so it has been awhile.
In any event, I thank you for your post. Fear is a beast but I will try to take your advice and concentrate only on the joys of the moment:)
 
in my family with 4 deaths and two suffering now with als-all this started with my father and aunts, there was no cases known in previous generation that all lived into 80's and ninty's-don't know where it came from. so far all my cousins that have got their dna test results from northwestern have been positive for fus gene mutation-if u want to help with research you can give blood to Nila at northwestern@312-503-2712
 
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