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Maureen9213

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Aug 27, 2018
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Loved one DX
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MA
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Boston
Hi everyone - I am seeing my primary care doctor tomorrow but wanted to get your opinion on my situation seeing as you have so much experience in this area.

My uncle passed away in Spring 2017 from ALS (he was late 60s) and my dad was just diagnosed with ALS (he is 74). I'm considering getting genetic testing for familial ALS, but in the meantime I am concerned about a couple of symptoms I've been experiencing. I am 40 years old.

A couple of years ago my hands started to tremble/shake when doing fine motor activities - especially when spoon feeding my baby. Even my husband comments on my hand shaking. Lately I've noticed it with so many other daily activities like shaving (can't keep a straight line) or counting out coins.

In addition, the middle finger on my right had has lost much of it's strength. I had a tough time opening a jar today and had to use my other hand.

I know you cannot diagnose, but I was hoping for any insights you could provide on my situation. Thanks.
 
It would be unusual for you to present so much younger than your relatives if this is FALS. What is your family mutation?

Tremor is not really concerning and there are of course many reasons for finger weakness but seeing your doctor is the proper approach.

I strongly urge you to get involved in FALS research. There are opportunities at MGH I can share. You can have the option of not learning your genetic status if you so decide
 
Thanks Nikki. I never considered that familial ALS would present around the same age in families.

I have not done the genetic testing yet, so I'm not sure of the mutation.

I am hoping my primary will refer me to a neurologist at MGH soon! Thanks.
 
The person who should be tested is the person who has ALS. Then if they carry one of the known mutations asymptomatic family members can consider testing
 
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