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[magleicester]

Hi,
I am new to this forum, My wife's mother died of MND 44 years ago and we have very little information with regards to her family or any part of her history. My wife has not been diagnosed, but has just read that MND can be passed on, from her mother and on to her children. This is causing her a lot of distress, as she is due to have an operation on her back, next Monday. We are looking up relations, of which are all deceased, but we will find nothing out in time for the operation. I dont know how to tell her not to worry! She must have the operation.

Any advice out there?

 

[Ms. Pie]

Good chances are that if there isn't a history of MND in past or present generations in your wife's family then your MIL case is Sporadic rather than Familial ALS. But to put her mind at ease there is a test she can have from her doctor to make sure.

http://www.alsa.org/about-als/genetic-testing-for-als.html

 

[skipper66]

I really don't understand why people would want to be tested. If they have the gene they will just worry and not enjoy their life while then can. There is nothing they can do to stop it anyway. My mom and several of her aunts had breast cancer as well as her. However, she passed away of colon cancer. I get screening but haven't been tested to see if I carry the gene. What's the point of living in fear. We are all going to pass away from something. Let's live why we can.

 

[Barbie]

90 % of all ALS is sporadic--and if she doesn't have any other relatives that have had ALS and died other than her mom she is probably clear.

The thing is-worrying won't make anything better or easier. and having the surgery will not cause ALS either. what ever will be will be, as Doris Day said. she is probably scared of the surgery (who can blame her!) and it is manifesting as a fear of ALS.

Good luck to you both.

 

[magleicester]

Thanks everybody.. We have found her grandfather and grandmothers death records and we are waiting for the certificates, hopefully they will show the cause of death as something completely different!
Not sure this will put her mind at rest, but lets hope!

Many thanks for the link, it explains quite a lot..

 

[Ms. Pie]

Familial ALS is extremely rare.

 

[Nikki J]

Hi I am from a FALS family. As people have said one relative only it is most likely sporadic. I was unclear though. Is she afraid that whatever symptoms she has that are requiring back surgery are not from her back but in fact indicative of MND? If so she needs to address that with her doctor before the surgery. If she has weakness for example and has concerns then she should ask to be evaluated again to be sure.

I am afraid that a blood test can not completely rule out FALS in this setting. Not all the genes that cause MND are identified. If there is a known gene in your family then you can rule that gene in or out.

Good luck. I would really follow up with the doctors at this stage
Nikki