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Faith27

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Hi

I haven’t been here in a while, to keep story short my grandmother died at 72 with bulbar, 4 of her brothers as well around same age. My mother died at 67 diagnosed at 65 and a cousin of hers diagnosed at 68 died at 70. I’m 39 years old and since she was diagnosed I started twitching everywhere not a big deal as I’m sure is anxiety. But recently about 5 weeks ago my left foot has been twitching nonstop and it feels as if I’m standing in top of a vibrating object, ad to that pain and cramping of the toes and arch of foot. I have an appt with Benatar on Tuesday but I’m so scared. I have three beautiful children 6 yrs, 4 yrs and 4 months (last one unexpected as my husband had undergone vasectomy and it failed us) but we were blessed with our baby girl. Is it normal for this disease to present almost 3 decades early? No one from my generation in the family has had it, I have much older sisters who are fine and my mother has two sisters which up until now are fine.
 

Nikki J

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30 years is highly unusual. If you are seeing Dr Benatar you will have answers very soon. Is this preFALS or clinic?
 

Faith27

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PreFals, I chosed not know my genetic status
 

Nikki J

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But I think you needed a known family mutation to enter the study? What is it? You may have told us before but search is broken just now
 

Faith27

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Nikki J

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As you know you are on the young side for it to manifest. I will be thinking of you Tuesday and hoping for good news ( which I expect). Try to keep busy this weekend.
 

Faith27

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Thank you Nikki!! I only pray to God to give me health to see my children grow and may science advance enough for them to not suffer this horrible disease if I end up having it.
 

Nikki J

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What happened?
 

Faith27

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Hi Nikki

He did an extensive physical exam and concluded no weakness so no ALS, he also told me what you said as well the likelihood of this presenting at my age is minimal so he gave me a lot of reassurance and for now to enjoy life and my children. Thank you for checking up on me
 

Nikki J

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That’s great.So happy to hear. I see that when your mom was sick you also worried about twitching and vibrating. unless you choose to learn your genetic status you are going to have to live with uncertainty. Being FALS is hard. Maybe see someone for some coping strategies? You are young and have lots of years ahead
 

Faith27

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Thank you Nikki will do, coping with this for me has been difficult more than my sisters. Thank you again for your advised and May God bless you enormously ❤️
 
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