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Anxiouslywaiting

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Joined
Mar 24, 2014
Messages
5
Reason
Learn about ALS
Country
US
State
Ca
Hi, so I am pretty new to this. For the last 3 weeks I have been driving myself completely insane! This all started around feb 28 with a weird tight feeling on the left side of my face that eventually spread Down my neck arm and then to my leg.. I went to the ER had brain MRI CT and lots of blood work but everything was normal.. A couple of days later I started what I would call twitching in my legs (mostly calves) but it also goes into my feet, thighs , stomach , back and arms.. This is what really scared me. It feels like something is popping in my body sometimes I can see the movement sometimes I can't it's not constant but every now and then I feel a couple thumps somewhere on my body.. I also noticed today that my left calf is larger than my right.. I don't know if this is normal or if something is really happening to me. My anxiety is getting the best of me right now , this is the only place I feel where I can say how I'm feeling.

I'm a 21 year old female so I have been told that having ALS is extremely rare but I can't seem to reassure myself that I don't have it! I'm a nervous wreck right now. I also feel like my left arm is getting weaker as the days go by like it's not really there. My hand has a strange feeling to it especially when I try and touch my thumb and pinky together.

I have been so stressed out I can't focus on anything and I know my anxiety could be making things worse. I just need for somebody to tell me how als starts and if this is something that I should even be worrying about? I'm sorry for the long post but I would appreciate it so much if someone could give me a little knowledge in als. Thank you so much
 

Dusty7

Senior member
Joined
Aug 3, 2013
Messages
521
Reason
PALS
Diagnosis
08/2013
Country
US
State
FL
An ALS diagnosis starts by you going to a neuro, him doing a clinical exam, then an EMG if he decides that is appropriate.

It does not start with twitching or feeling like you're getting weaker. Those usually start from anxiety.

It also doesn't start in 21 year old females, but I'm not a doctor. So, go see your PCP and see if he'll give you a neuro referral.
 

Anxiouslywaiting

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Joined
Mar 24, 2014
Messages
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Reason
Learn about ALS
Country
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Thank you for replying, I guess I should have stated that in my original post, I have seen 2 neuros the first one basically blew me off and the second on scheduled me for an emg April 7. I'm very new to this forum and I'm not quite sure how it all works. I feel like I'm being blown off by everyone because I'm 21. Are you able to tell me how als starts? What are the initial symptoms? I'm really not trying to upset anybody I'm just so scared right now.
 

Dusty7

Senior member
Joined
Aug 3, 2013
Messages
521
Reason
PALS
Diagnosis
08/2013
Country
US
State
FL
Initial symptoms are generally clinical weakness.
Not "I feel weak."
But I can't...
I can't stand on my toes.
I can't stand on my heels.
I can't stand on one leg.
I can't balance with my eyes closed.
I can't grip anything between my thumb and index finger.
I can't make a fist.
I can't extend my fingers.
 

Anxiouslywaiting

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Joined
Mar 24, 2014
Messages
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Reason
Learn about ALS
Country
US
State
Ca
Thank you, do you know if before the actual weakness happens if there is a little weakness prior? Meaning does it just happen suddenly or is it gradual.. So if I say I feel weak now, what are the chances it will turn to an actual weakness? Sorry if that doesn't make sense
 

Dusty7

Senior member
Joined
Aug 3, 2013
Messages
521
Reason
PALS
Diagnosis
08/2013
Country
US
State
FL
As I have argued on other strings on this site, I don't believe "perceived" weakness turns into clinical weakness.

Clinical weakness just sneaks up on you and one day you notice you can't do something. Don't worry about weakness you perceive. That weakness is caused by anxiety. Relax! Go get a referral and believe your neuro.
 

Anxiouslywaiting

New member
Joined
Mar 24, 2014
Messages
5
Reason
Learn about ALS
Country
US
State
Ca
Does anyone have any suggestions on how I can move on from this.. I know this May be irritating but I honestly just came here for support and encouragement. I have been depressed feeling like I have no one to talk to. I don't need a potty party just need help. I feel blown off by every doctor i have seen. Does anyone have any stories they would like to share?
 

Dusty7

Senior member
Joined
Aug 3, 2013
Messages
521
Reason
PALS
Diagnosis
08/2013
Country
US
State
FL
You move on by having your EMG on April 7 and finding out the neuro's diagnosis. You can believe him or not. But there's little anyone can say without you having the test.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,488
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
You wrote, ("Does anyone have any suggestions on how I can move on from this..") Yes, stay off the Internet Med Web sites, leave this Forum (seriously) from now until you have your EMG. And...believe whatever the 2nd Neurologist tells you and accept his probable diagnosis of anxiety. Being 21 years old, finding something to do between now and then, is not hard to do (I remember those days).
 

Anxiouslywaiting

New member
Joined
Mar 24, 2014
Messages
5
Reason
Learn about ALS
Country
US
State
Ca
I guess it's just the constant worrying.. I can feel movements in my body as I speak, is it common for fasciculations to be all over? Thank you for being so helpful
 
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