Old 04-28-2018, 06:44 PM #1 (permalink)
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Default C9orf72

I have not posted in a while, but mom passed on Feb 22 from respiratory failure, she lived 16 months with the disease and what was heartbreaking is that despite us knowing this would happen we did not know it was going to be so soon, from laughing with her on Saturday to seeing her fall sleep on Monday and never waking up. Needles to say heart breaking. I was pregnant and my son was born 6 days later.

I have a question for you all, I pretty much started with the famous twitching since my mother was diagnosed and of course as you are all very familiar with the fear is always in the back of my mind. I know I have been under a great deal of stress and grieving in addition to giving birth to my second child. However over a week I have had this constant buzzing feeling in the sole of my left foot and twitching of my left foot and leg as well as my left hand (these are the constant for the past 16 months). Of note I have no weakness and I feel embarrassed to ask you all this but should I be concerned? I have no weakness and I am terrified not so much for me but for my children I would hate to have this horrible disease and leaving them so young. In my family the onset of the disease has always been in the 60s, could it possibly start 3 decades early all of the sudden?

Again I apologize for asking this to you as I now you are probably saturated with all this questions
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Old 04-28-2018, 07:20 PM #2 (permalink)
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Default Re: C9orf72

Your family is documented c9? But you do not know your genetic status?

Generally c9 can get younger about 7 years per 2 generations so your scenario seems very unlikely. C9 is not supposedly start before 35 but it is more usual late 50s to early 60s though you will find quite a few people younger.

More importantly twitching and buzzing are not worrisome for ALS. See your doctor for proper reassurance
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Old 04-28-2018, 07:32 PM #3 (permalink)
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Default Re: C9orf72

Quote:
Originally Posted by Nikki J View Post
Your family is documented c9? But you do not know your genetic status?

Generally c9 can get younger about 7 years per 2 generations so your scenario seems very unlikely. C9 is not supposedly start before 35 but it is more usual late 50s to early 60s though you will find quite a few people younger.

More importantly twitching and buzzing are not worrisome for ALS. See your doctor for proper reassurance

yes Nikki documented I will be starting the pre-symptomatic FALS research with Dr Benatar. I do not know if I am a carrier yet.
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Old 04-28-2018, 07:38 PM #4 (permalink)
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Default Re: C9orf72

That is great that you are doing the study. In the meantime see your pcp for reassurance about your symptoms.
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Old 04-28-2018, 09:24 PM #5 (permalink)
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Default Re: C9orf72

Faith, Nikki has given you wise advice and it sounds like you are on a good path. You have pretty much answered your own questions.

I'm very sorry about your mom, but happy to hear of your new son.

Best,
Laurie
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Old 05-15-2018, 06:08 AM #6 (permalink)
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Thank you Laurie
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