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rasmus

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Jul 30, 2018
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Learn about ALS
Country
FI
State
Keski-Suomi
City
Jyväskylä
I spoke on the phone with a familiar doctor, who didn't seem very concerned after I explained her everything. She didn't even really comment on it other than that she thinks that it's probably nothing and not a condition of any kind.

However I've still been feeling super anxious. I read a few old threads on this forum and elsewhere, and found a lot of people saying that their ALS started with random twitching and cramping everywhere for possibly years, and then bulbar symptoms.

I feel like I slur my words even though my family insists that I don't. It feels like there's constantly mucus stuck in my throat, and after meals it very often feels like there's little crumbs of food stuck in my throat and I have to cough a little to get rid of it.

When I look in the mirror I think my tongue looks weird and thin, and there's a small dent visible on the right side of the tongue in certain positions. My dad has seen this, and he thinks it looks normal, but I'm still freaking out. I also get a slight burning sensation mostly on the right side of my tongue, but I feel like I've made this worse by constantly pushing my tongue against my teeth when I'm anxious.

I also still get the cramps, and my back still hurts, although it varies a lot from day to day. Is it reassuring that I don't get cramps/pain in some areas I used to get them often in, like my right calf?

Have you ever heard of someone under 20 having bulbar onset ALS?
 
You’ve posted repeatedly in the last few months about twitching for 3 years. We have told you repeatedly you don’t have ALS.

Now you talk by phone with a doctor who is probably not a neuromuscular disease specialist and who probably didn’t examine you and still tells you “it’s nothing “. Yet somehow even she failed to reassure you.

Why do you think we’re going to tell you something different?
 
If you post again without actually seeing a doctor for an exam you'll be banned.

You're wasting our time.

Is that clear enough?
 
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