Old 11-03-2018, 08:01 PM #1 (permalink)
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Default Gen-fi

Just a quick update.
My husband joined the Gen-fi study and has been for his first round of tests .
He also had an EMG as he has C9orf72 .This showed mild changes to the left lunar sensory nerve and some change with his left ankle. They said it's not concerning. Does this mean we can relax and he won't get ALS?

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Old 11-03-2018, 08:08 PM #2 (permalink)
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Default Re: Gen-fi

Do you mean EMG and NCS ( needles and shocks?). I don’t know what they saw in the ankle but a sensory nerve abnormality is not worrisome for ALS. Unfortunately it is not predictive for the future.

I believe he has FTD? I must tell you generally FTD precedes ALS if you are going to have both. I know people though who have C9 FTD and never developed ALS.

What happened to your brother in law?

I am glad you are doing gen-fi. It is an important study
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Old 11-04-2018, 01:03 PM #3 (permalink)
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Default Re: Gen-fi

Hi.
I think he had an EMG but he did also have the needle test. The left ankle didn't respond as it should but the Dr said it was just an anomily.They are not concerned. The left side of his body had problems during the examination at Gen-fi but they said it was probably dyspraxia caused by ftd. They promised they would keep a close watch.
My brother in law decided he didn't want to join the study or take up the offer to see the neurologist and get a diagnosis and genetic test. It's his choice I suppose and as we strongly suspect he has FTD it is not easy to get him to listen.
Thanks for the support. I guess it's just a case of watch and wait. I wish you all well. Let's hope Gen-fi can help us all.
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Old 11-04-2018, 01:39 PM #4 (permalink)
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Default Re: Gen-fi

The needle test is the emg. The ncs is the shocks. They are frequently done together but in ALS they are concerned about the needle portion. I am glad you are seeing that team. Hoping things stay as ok as can be.

Sorry your bil did not choose to participate and very sorry he seems to have FTD

The data from GenFI as I am sure you were told is hoped to be of use in upcoming trials for the genetic causes of FTD. C9 of course overlaps with ALS so it will help both diseases
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