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Nicky151179

Active member
Joined
Aug 6, 2013
Messages
48
Reason
Learn about ALS
Country
Au
State
Nsw
City
Corowa
Hi guys just wondering if any of you have atrophy in temples and flaccid facial muscles also neck muscle gastropods I am also experiencing pain in ears and get a rash on chest
 
Sorry spellchecker on phone gastropods meant lazy
 
Has a doctor looked at it? I was 100% sure I had atrophy on my tongue, in the area where I have tons of faciculations and quivering, my neurologist who also has special training in neuromuscular disease took one look and said nope, no way. So what might seem like atrophy may very well not be. If you have not seen a doctor , if not you should go see one. Good luck to you and I hope all works out ok, I know first hand how scary this kinda stuff can be. And pray everyday for the folks who have this horrible desease! :)
 
Bailey - Nicky has seen doctors. Several apparently.

She just has too many threads with basically the same text.

I wish I had an answer for her, but I don't have a clue.
 
Got ya, one would think a doctor would have told her she has atrophy, if atrophy is there. :)
 
Yes a doctor has told he I have atrophy face and body,many doctors that just don't know what cause is
 
Have you been to a neuro, and if als is a real concern, see a neuro at an als clinic.
 
I'm in australia no als clinic,yep two neuros they didn't really care as they are baffled to what this is.i have been referred to muscular specialist in Sydney now,it has sent us in financial hardship seeing all these doctors and I find they just give up.this is me and my families lives,at times u have just wanted to give up and take all this away from my kids watching mummy get sick is aweful and having no answers is terrifying I'm progressing quick
 
Is bullbar onset like my facial changes
 
Tell yourself what you can still do. Can you still walk, talk, eat? Hug your kids? Focus on those things. And please do look into anti anxiety meds.
 
I have already tried to end my life as I feel like all this is turning me insane and nobody wants to help,they tell me to just accept what is happening and live.easier said then done I am in pain and sick all day all night,I'm now disfigured and looking after my beautiful family is getting harder.i have never felt do scared,I desperately wanted to find something treatable but als is almost the only thing left.my twitching is almost constant now and ear pain is so painful
 
I'm on many antidepressants and having lots if therapy to deal with this but I'm giving up
 
The face pain is the worst out if everything it's a disgusting feeeling
 
Pain from what I understand would point away from als. If you're truly at the end of your rope, you need to call a crisis hotline. Your children need you so don't do anything rash! It sucks not feeling well. But you need to get your mental health in check ASAP
 
Trying so hard,are u diagnosed yet?and is there pain and sensory pain in als
 
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