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

[sara06]

Hello everyone. I am fairly new here so most of you probably don't know much about me. My name is Sara, I'm 22 years old. I have a 3 year old daughter named Bailey. I am taking care of my mother who was diagnosed with ALS in December '05. My grandfather passed away from it in 1975, my uncle in 1980, and my great uncle in 1994. My mother's cousin was just diagnosed in January of this year...so my siblings, my cousins and I all know that we have a 50% chance of carrying the SOD-1 gene, and sadly enough, so do our children. There are 12 of us, and collectively there are 20 children. I am just looking for advice from anyone and everyone. I am completely undecided on whether or not I would like to be tested for this gene. I would just like to know what others feel about the issue, and I welcome both sides of the spectrum. I just need some outside objective points of view.

Thank you, ~Sara~

[john0812]

Sara,

You are so young to have to worry about such matters. I am really sorry you need to be here. I empathize with your situation - whatever you decide to do - I pray that you don't get it.

I am not yet diagnosed and have two of my own children (daughter 25 and son 24 soon) and a stepson. I am pretty sure that I have als and have not told any of them to date. I am so scared of it myself, but on a really bad day I'll start thinking about whether my children could also get als. I have two grandchildren (soon to be 3 grandchildren) of my daughters - they are beautiful children - I pray to God that it ends with me.

Take care Sara! Live your life to the fullest however long it is - one needs to do that regardless of when one will leave this earth.

[Al]

Hi Sara. So sorry about your family. It is terrible to have one family member with ALS and I can not imagine ever having others especially my children. That being said I think I would want to be tested. I would want to know so I could plan things. If you know something bad might happen or will happen it makes a difference on how you treat life. It may not happen or they might find a cure before it becomes an issue but I think I'd want to know. You might just not have the gene and it would make your life different as well. Hope this helps. AL.

[John1]

Hi Sara,

I can't offer a suggestion as to whether to be tested or not but I do have another one. Research based on a huge (one million) test group has shown that people who have taken vitamin E for several years have a considerably lower incidence of ALS. I don't know if that applies only to sporadic ALS or not. Since reading about it though I have often thought that if I were at risk of familial ALS I would take Vitamin E.

-John

http://www.hsph.harvard.edu/press/releases/press12172004.html

[Meg1]

Sara --

I look at this mathematically. You will likely spend the rest of your life (until and unless you are diagnosed with ALS or get the results of the test) worrying that every random fasciculation, moment of weakness, trip on a curb, leg cramp, etc. is the beginning of ALS. If you have the test, there is a 50% chance that you can put these worries out of your mind. Seems like a no-brainer to me--if you don't have the test (and you are like most people) you're going to do the worrying anyway. If you do the test there's a 50% chance you'll find out that the worrying is warranted but a similar 50% chance that you can live the rest of your life without that worry. And, as John points out, if you're SOD1 positive, you can take advantage of any therapies believed to ward off ALS onset. Note, though, that these probabilities are predicated on the assumption that your relatives have the SOD1 gene--not all FALS do, so if your family is one of those whose ALS is tied to a different, and undiscovered, gene the genetic testing will give you no useful information.

Incidentally, until you find out that you carry the gene or develop ALS, your children's chances of having ALS are 25%, not 50%.

[Pearl]

I don't know anything about this form (family related ALS), but if it were me, I'd probably get tested so I could do estate planning very early, chose the type of house I lived in with disability in mind, make the most of the active life I have, etc.... These are things all of us really should do anyway.

You might be interested in knowing that Emory University in Atlanta is doing some sort of research study related to this type of ALS.

[rcharlton]

In a lot ways ignorance is bliss when it comes to ALS - but it sounds like you will be worrying about it anyway.

Before you get tested - make sure you max out on your insurance - life, disability etc.

I'm trying to recall if a standard insurance application includes questions relating to family history of neurological disorders - you might be stuck there.

[joelc]

Be careful thinking you can max out your insurance and collect. All companies I know of have a clause about preconditions which would exclude a person when they found out they either had a condition, or were having problems and going through testing.
Life would be great if we could purchase insurance and coverage AFTER finding out we have a terminal illness. DOES NOT HAPPEN.
I looked into it before I actually had a diagnosis and was told that even if I was healthy before extending coverage, if I received the diagnosis 1 year after, the policy would be void.

Please find out the exclusions and fine print before spending money on something you might not collect.

[rcharlton]

Be careful thinking you can max out your insurance and collect.
Please find out the exclusions and fine print before spending money on something you might not collect.

Joel is right - you have to be very careful - the insurance companies will look for any out possible to deny coverage - and it is fraud to lie on the insurance policy - but if Sara has not undergone any testing - and currently is not experiencing any symptoms - she might still be able to qualify - unless the questionnaire delved into family histories of neurological disorders. Of course I think most applications will have a catch all "Are there any other factors material to your health about which we should be advised about".

But it's definately worth looking into.

In any event Sara is young - so insurance should not be too much - but you have to look into this before you go talk to your doctor about testing - and then you should probably wait a while before getting tested

Good luck!

[dana]

Hi Sara,
Most of the posts are saying that they would probably get tested. I, on the other hand, do not think that I would. I think that if I knew I had the gene, I would worry more about it than if I didn't know. It reminds me of the tests they always want to do while you are pregnant. You can get blood work done to see if you child has down syndrom, but there is a chance of false positives. I would rather not know and just deal with whatever I am given when the time comes. I don't want to spend my whole pregnancy worrying about what I might have to face if the baby is in fact born with downs, when there might not be anything to worry about in the first place. Does that make sense? It is a tough decision and you will do what is best for you and your family. Isn't it true that if you do indeed carry that gene, it doesn't necessarily mean you will develope ALS? I thought I had read that somewhere, but I could be wrong. Good luck with your decision and know that God has a plan for your life already.
Dana

[BWk]

I asked my children if I got tested would they want to know if I had the genetic kind of als and they said "yes" without hesitation. Whether this is really a wise choice on their part, I don't know?

[joelc]

I have been quiet on this one so far, but feel I can give my thoughts now.
Everyone is different and because of that it is hard to recommend to someone what they should do.
Personally - I would want to know. For me it would be much worse not knowing and always wondering. Once a person knows, they can act appropriately toward it. Not knowing would be so much worse - I hate the unknown. I can deal with reality, but not knowing and always wondering would be deabilitating. I would likely talk myself into having ALS!
When I was having symptoms and problems the doctors could not diagnose that was hard. It was a real relief when they told me I had ALS. Thankfully my diagnosis came within 6 months - God knew I needed a quick diagnosis.
Now my time and energy can be better allocated.

Good luck on your decision and God Bless!

[Meg1]

Hi Sara,
Most of the posts are saying that they would probably get tested. I, on the other hand, do not think that I would. I think that if I knew I had the gene, I would worry more about it than if I didn't know. It reminds me of the tests they always want to do while you are pregnant. You can get blood work done to see if you child has down syndrom, but there is a chance of false positives. I would rather not know and just deal with whatever I am given when the time comes. I don't want to spend my whole pregnancy worrying about what I might have to face if the baby is in fact born with downs, when there might not be anything to worry about in the first place. Does that make sense? It is a tough decision and you will do what is best for you and your family. Isn't it true that if you do indeed carry that gene, it doesn't necessarily mean you will develope ALS? I thought I had read that somewhere, but I could be wrong. Good luck with your decision and know that God has a plan for your life already.
Dana

But, Dana, you're talking about huge differences in probabilities here. Even in a woman's upper 40's (when most of us couldn't get pregnant even with fertility treatment) the chances of having a Down Syndrome baby are only about 4%. Below the age of 35 the probability of a Down Syndrome child are less than 1/2 of 1% (and, at young ages, much, much less)--of course it doesn't make sense worrying about such small chances. Sara's talking about a probabilty of 50% that she will get ALS--150 times the probability of a Down Syndrome baby even at the relatively advanced age of 35. It's hard to imagine the person who wouldn't worry about that.

Incidentally, my understanding of the genetics is that carriers of the SOD1 gene (or any unidentified gene for familial ALS) will get ALS if they live long enough.

[dana]

Maybe that was a bad example. I was basically just saying I don't think I would want to know because if I did have the gene, I would spend the rest of my life worrying about when I would get the disease. I know others feel that if they were not tested they would always worry about having the disease too. I guess it is a lose lose situation, but if you do get tested, and it is negative, you can be very relieved.

[Leslie]

hi sara,

my family was diagnosed with Familial ALS last month and we are beginning testing for the SOD-1 gene. If my dad is positive for SOD-1 then I will definitley be tested- the results will either be a huge relief or a new reality.

Leslie

[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]

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]

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]

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.