50/50 Chance Of Getting Als, Would You Be Tested?

[Michelle]

Hello All,
My husband died of ALS six months ago and now his brother has been diagnosed. Our grown children are now faced with the same question to be tested or not. All have agreed not to be tested, to increase their life insurance, to take out long term care insurance, and to live their lives to the fullest. One of the nurses at our ALS clinic said she would not be tested (if she were in the situation) unless they come up with a cure, then she would be the first in line! Also, it's my understanding that the test is not as accurate as it could be, only about 20% test positive, so theoretically you could get a negative result and still have the gene. Grim, I know.
Michelle

 

[BWk]

History

Michelle, Did anyone else in your husbands family have als before he got it. Any family history? Sorry to hear your brother-in-law has it now. Barry

 

[Al]

Sorry about your husband and brother in law. I think I'd be doing what they are doing. Live each day to the fullest. Plan for tomorrow but live for today. AL.

 

[Meg1]

Hello All,
My husband died of ALS six months ago and now his brother has been diagnosed. Our grown children are now faced with the same question to be tested or not. All have agreed not to be tested, to increase their life insurance, to take out long term care insurance, and to live their lives to the fullest. One of the nurses at our ALS clinic said she would not be tested (if she were in the situation) unless they come up with a cure, then she would be the first in line! Also, it's my understanding that the test is not as accurate as it could be, only about 20% test positive, so theoretically you could get a negative result and still have the gene. Grim, I know.
Michelle

Not exactly.

Sara, I think it's important for you to realize that the SOD-1 gene--which is the only one that can be tested for--is not the gene that affects everyone with FALS. The first person who needs to be tested for the gene is your mother (or another living blood relative of hers who has confirmed ALS). If she has the gene, then the genetic test you will (or may) take would be pretty much 100% reliable--if you have SOD-1, you'll get ALS if you live long enough and if you don't have SOD-1 you're chances of getting ALS are the same as most everyone else's in the world. If, however, your mother does not test positive for the SOD-1 gene that means that your family carries another, as yet unidentified, gene that causes ALS. If that is the case, you cannot find out whether or not you are affected.

 

[sara06]

Hi everyone. I would like to apologize for not responding sooner. Between taking care of mom 24/7, my 3 year old, and my brother getting married in 12 days, things have been a little busy around here I would just like to say thank you to everyone who posted on this subject. Although I am still very undecided, I really appreciate the different points of view. Reading these posts is helping me to search myself with a better understanding. I know that it is going to take a lot more searching and prayer before I make any life changing decisions. I will try to keep everyone posted in the event that I have any breakthroughs. But for now, I ask that people keep posting their opinions and keep me and my family in their prayers. I can only hope for a miracle that the buck stops with my mom's generation, and that all of us kids didn't get this gene. Thank you all for your support.

~Sara~

 

[Islander]

also have 50/50 chance of SOD1

Hello everyone,
This is my first post, please forgive me if this a dumb question. My grandfather died of ALS as did one of his bothers and one of his sisters. Now my mother and my aunt have ALS as well as several more of their cousins who are now deceased. Two of my first cousins, my aunt's daughters, have the disease. I know I have a fifty percent chance of inheriting the gene, but what are my chances of developing ALS if I do have the gene? I have read in different sites that I have 50/50 chance by age 46, I am 45, and 90 percent chance by age 70. Is this true? As you might expect I am a little worried, as I have some possible symptoms now.

thanks Islander

 

[Al]

I'm not really well versed in the familial aspect of the disease but I'll ask someone that I know that might have a better idea. Have you been tested for the sod1 gene? I think I'd get tested to see if I did in fact have the gene seeing as you think you are getting symptoms. Don't take this the wrong way but are you really having possible symptoms or is your mind working overtime because of your age and the percentages? AL.

 

[Islander]

getting test

Thanks for the quick response! I will be getting the test soon. Hopefully it will be negative and my symptoms will disappear. I understand fear and stress can cause als like symptoms on their own. I have the twitches, cramps, and some weakness in my legs. All of which could be explained by other things. Lets hope so.
Islander

 

[Meg1]

I just wanted to point out (again) that only 20% of FALS carry the SOD-1 gene. Unless you know that your relatives do, a negative test will tell you nothing. You should have the test only if affected members of your family are SOD-1-positive.

 

[katbell]

I know this a very late reply, but Sara I would love to see a follow up on what you decided, if you have.

I have googled 'getting tested for the MND gene' this morning and this is the first forum that came up. I am 28 yr old Australian gal, the oldest of 4 cousins in my immediated family and about 20 in my extended family and as yet none of my generation have been tested. I am certainly coming to the age of thinking about raising a family and have looked at my options of if I am pregnant having a MND free family, but then there is still the steps to get tested first.

This topic has been a point of discussion amongst my family and friends for 10 years since we found out about the gene and although its easy for everyone to say, yes get tested it would be a weight off your mind, I worry that if the result if positive, then it certainly wouldn't be a weight off my mind.

My 2 aunty's and unclue were tested for the gene about 8 years ago after my father had passed away, and my uncle and one aunty were positive and one aunty was negative. Since then both my aunty and uncle have passed on from MND but whats sticks in my mind is my aunty that has passed on saying that getting tested was the worst decision she ever made as she worried about it everyday from that day, yet my aunty who was negative can not encourage me more to get tested. The chances are 50-50 and the response to peopel's opinion seems to be 50-50 to. Its such a hard decision to make!

I would love to chat to other people who have or are facing this decision.

Kath

 

[irismarie]

I would give a definite NO; LIve each day as it comes. We risk other things like cancer, road accidents, home accidents also on very high percentage. We learn to put that to the back of our minds and LIVE. Let the future take care of itself. Even if the coin came down on the wrong side, you mmight have thirty years or more before it strikes, so why darken all that time? Live life, have hte occasional worry as we all do about cancer and crowded roads, but do not anticipate. PUt this worry along with the others back where it belongs, in the sack of "unknown possibilities". THat is life.
Would you really want toknow you were going to be killed in a road accident in the future? I think not. So why this?
Love to you
IRismarie

 

[TedH5]

This is obviously a personal decision. That being said I think for me personally I would not be tested. In addition if someone were asking my advice, my response would be based on how are they dealing with the possibility of having ALS know and how would they deal with it if they received a positive gene test? My point being you can obsess over the fact that you have the gene for ALS etc etc, and end up dying from something totally seperate and random. None of us know when our time will come, even those of us with a diagnosis. I know this may sound corny but to be human means we are all terminal since the day we are born. We are all given one life to live and if we work it right that is all we need. So if someones disposition would be to obsess more or less based on that test I would do what would cause them to stress less. I know it is very easy and cavalier to say do not worry about it but I have been diagnosed and am taking that approach. I am not in denial and am obviously very early on but I plan on living my life and not spending every minute of my life feeling sorry for myself and obsessing over why me. Instead I am living my life and making sure that when the end comes by whatever cause I have no regrets! I am 38 years old and I would not trade my 38 years for someone else's 100 years of life! Make everyday, let alone every year count!

 

[akaal]

Hi Sara, Emory University has a website that focuses on fALS. It includes a section that has some answers to the questions you are asking. You may find it helpful. The website is ARC @ Emory Website - Familial ALS

 

[Alyoop]

This is a very difficult decision. My neuro and my husband want me tested for it as well. I decided to put it to my adult children last week, as my eldest was home from UK. I realised that this was not entirely my decision. They were all keen to know. I will now think some more but keep their opinion in mind.
Just dont rush into it. Take a deep btreathe and do it when you are at peace with the answer that you have. Best wishes
Aly

 

[Phil M]

If it was me, I wouldn't want to know. It would have a negative impact on you emotional health, and effect your future. That being said. I would think hard about it if I wanted to have kids.