Too young to die

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mvtthew

New member
Joined
Mar 24, 2018
Messages
8
Reason
PALS
Diagnosis
03/2018
Country
US
State
NY
City
Utica
anyone on here start with twitch feeling?
 
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Re: Too young too die

Hello Matthew,

I'm sure we'd love to know a lot more about you. How were you diagnosed? Where are you from? Married? Age? What clinic do you go to?

Twitches happen to many people for many reasons. Healthy people twitch. What are your symptoms?
 
Re: Too young too die

You're sounding like you should be in the Do I Have ALS section.

Have you actually been diagnosed? If so, tell us about it, don't post some odd question with zero background, OK?
 
Re: Too young too die

20 yrs old
from utica NY
told i was too young to have ALS several times
got 2 EMGs both clean about 3 months apart
only from the arms down both times
then speech issues
went back got an emg of neck face and tongue
came back dirty now the doctor wants to “wait and see”

my twitches started in my leg and chest then spread all over

sometimes its just a pop
other times its like a mini spasm
and i also get some that come multiple times in a row
they occur somewhat bilateral
both sides of jaw, cheeks, butt, waist, groin,chest, feet, hands, wherever
never had a twitch longer than 30 seconds
i even get them in my scrotum area 🤦🏽*♂️



the last emg was done at Strong Memorial Hospital in Rochester NY on 3/21
 
Re: Too young too die

So, no, you've not been diagnosed.

Moving to DIHALS.

Stay there.
 
twitches mean squat, zip, nada, zilch.
Twitching is far too common to be diagnostic of anything.

Please read the pinned post enticingly titled Read Before Posting.
 
Wait and see does not sound like a firm diagnosis. What are they waiting to see?

A dirty EMG is very non specific.

Who is your doctor at Strong ?

If you DO get a definite diagnosis I would not accept it without at least 2 opinions from ALS specialists at different teaching hospitals- probably three. Bulbar ALS is a tricky diagnosis and vanishingly rare in the young.
 
they want to see if i progress since like you said my age
i kinda accepted it already just wanted to see if anyone elses onset came like mine thats all
 
Listen to Nikki.

You've got nothing to 'accept', so don't.
 
It would be extremely rare for a diagnosis of ALS. There are many reasons for twitching and also many reasons for "dirty" EMGs.

Like others have said, do not accept a diagnosis of ALS unless you've gone to a neurologist who specializes in motor neuron diseases. If a doctor tells you that you might have ALS, then doesn't refer you to a specialist, I'd be looking for a new doctor. There are lots of mimics for ALS.
 
Kim gives great advice- please listen to her. Wait and see is not the same by a long shot as diagnosed in any case. Until you have heard those life crashing words, “ You have ALS” you are not diagnosed.
 
As you described it, that' a weird encounter with medical professionals, Matthew.

I won't repeat what others have said. Everything they said is 100% correct.

Until a neurologist who specializes in ALS has given you a firm diagnosis of ALS, you're not dying. (And we pretty much know what we're talking about.)
 
I appreciate all the responses thanks to everyone for trying to be so positive but i’m pretty sure i’m screwed
everyone blows me off bc my age but i’ve read a lot of stories and mine matches with a few ive read with the emg’s being clean at first then becoming dirty with twitching all over the body

i even know a kid from the same area as me who was diagnosed around the same age. but once again thanks to all who responded
 
Mytthew, as you wrote...

("i even know a kid from the same area as me who was diagnosed around the same age")

Really? Is he a member of this Forum? You joined. You know him so when you see him again please ask him. If he's not a member maybe you could suggest the Forum to him.

We need to hear from someone so young diagnosed with ALS.
 
ALS is never diagnosed based on twitching alone. In none of your posts have you mentioned clinical weakness, the hallmark symptom of ALS. At this point you have been diagnosed with nothing. There are a whole boat load of other things to rule out before ALS would even be suspected. Most people have been through years of investigation into symptoms before diagnosis.
Vincent
 
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