Gene Testing

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Foodie1

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I tested negetive for C9 a while back and today my results from the Envite ALS panel which includes SOD1 came back negative. My most recent EMG a month ago came back negative. Doctor said it it still possible to get ALS Even if gene tests come back negative and is something to keep watching. My mom passed away from bulbar onset. Just don’t know what to do my tongue is shrinking and can can see fasticulations. Doctor saw them to. My tongue has been sore especially at the tip of my tongue which I heard could be an early bulbar symptom. Is there another gene I can for ALS? Just would wanna get into a trial before it’s to late and I’m in bad shape. I am convinced I have ALS all bloodwork and every possible neurological test has been done and it’s all negative which to me points to ALS. All over Muscle twitching Tounge shrinking lip and chin twitching mother having it to me points to me having ALS

what to do ?

FOODIE 1
 

lgelb

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What to do? Get help for your obsession, Jason. Has anyone but you verified that your tongue is shrinking? Twitching means nothing, and if you don't have a genetic risk, the odds of having ALS at this point just because your mom did are almost equivalent to the normal odds your age -- in other words, extremely low. Nor do you describe an ALS picture, you saw an ALS specialist, and your EMG was normal. So the odds you are walking around with ALS go down about as low as they can go.

Nothing you have said points to your having ALS. It's not unusual to have fears like yours, but when they are unfounded, it's time to let them go, so you can have the healthy life your mom would want.

Best,
Laurie
 

Foodie1

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Thanks Laurie
Nobody has verified my shrinking tongue because nobody knew what it looked like before 😊 I just know that it is plus I am doing other things like biting my tongue and cheeks. Sometimes when I open my mouth salvia sprays out. Also when I swallow I make frog sounds which is probably early dysphasia
 
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lgelb

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Dry mouth and anxiety can easily explain the biting (or I think we covered seeing your dentist about misalignment, before).

Nor is any of the rest what happens in early ALS, bulbar or otherwise.

It appears from your unwillingness to backtrack that you're asking advice you're not willing to take. So, that's advice that no one actually struggling here needs to give.

Therefore, I'm closing this thread. You need to get help, and evidently not from us. No More Panic is one place to start if you're not ready to see someone on your own. Please do not start another thread here-- it wouldn't be healthy for you.
 
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