Old 11-21-2017, 10:10 AM #1 (permalink)
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Default fals or sporadic?

hi
i have als, limb onset age at start of symptoms 47. when i was diagnosed there was no hint of any family history. Not good but at least i wasn't worried about my kids.

today i have had the devastating news that my mum has been diagnosed with bulbar onset at age 75. the doctor has arranged for genetic tests.

what are the chances of us both having sporadic onset? is this how fals starts? i am so worried.

Wendy
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Old 11-21-2017, 11:09 AM #2 (permalink)
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Default Re: fals or sporadic?

I am so terribly sorry Wendy. Even if this is SALS what horrible horrible news!

It is unusual to have this age range but it does happen. The age range between my sister and our mother was about the same though they were younger than you and your mum. I have a friend who started symptoms before her mother too. All of them were c9. My family had history though.

C9 can appear de novo ( not inherited just happens). Careful history review can show previous suspicious cases in the family for dementia if not ALS in other cases but I am sure the doctors have done this.

Coincidence does happen of course. I think 2 first degree relatives with ALS is called possible FALS here

If it is FALS it is likely c9 especially given your location. Good news if it is- I am sure there will be answers for your kids. Several types of gene blocking therapy are in development for c9.

If it is c9 and your kids are interested there are opportunities for asymptomatic relatives to help with research. 3 of my family are participating currently and there are multiple sites in the Uk

Feel free to pm me

Last edited by Nikki J : 11-21-2017 at 02:16 PM
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Old 11-21-2017, 11:37 AM #3 (permalink)
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Default Re: fals or sporadic?

Thanks Nikki
There is no history of dementia just arthritis. Generally they are are a healthy bunch, although my aunt who is 89 is being tested for parkinsons, i will check with my neuro re genetic tests
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Old 11-21-2017, 11:40 AM #4 (permalink)
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Default Re: fals or sporadic?

One of my relatives had psp which is in presentation similar to Parkinson's. Psp is a rare manifestation of c9
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Old 11-21-2017, 02:14 PM #5 (permalink)
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Default Re: fals or sporadic?

So sorry Wendy, I can't imagine how you are all feeling with this diagnosis. Does she live near you? many hugs
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Old 11-21-2017, 05:18 PM #6 (permalink)
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Default Re: fals or sporadic?

Wendy,

I'm so sorry to hear about your mom but glad Nikki has a load of info that should be helpful. I was tested for c9 at Hopkins because my mother's side had a history of dimentia and some autoimmune things that presented like ALS but were never diagnosed. Her dad died at 42 and they never quite figured out what killed him.

I have heard of two husband and wives that both had ALS. I grew up in a cluster area and one couple was from there so anything is possible.

You and your mom are in my thoughts and prayers today.
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