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Akellie47

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Joined
Jan 30, 2014
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5
Reason
Learn about ALS
Country
US
State
IL
City
Sugar Grove
Hi everyone. My name is Alex and I'm 21 years old. Over the past year I've had some concerning symptoms and I need help because I have no idea what's going on. Last June I injured my neck and could barely twist it for almost a day. A few weeks later I started noticing twitching in my right arm. Months passed and then in January after widespread twitching, I started noticing my muscles in my body start to cramp. One night both of my hands went numb as well. I had a Mri of my brain and neck done in January which came back normal. In February I had an emg ncv of the arms which came back normal as well. Now Its almost October and a few weeks ago I had another emg ncv on my legs this time which came back normal (of course) as well. My concern is is that along with the body wide twitching and cramping, I'm experiencing stiff hands in the morning when I wake up and I even get spasms and tics in my face. I'm going crazy trying to figure out what this is! I know there's something neurological going on but does any of this sound like something neuromuscular like mnd? As of right now my symptoms are the twitching, cramping, numbness and tingling, spasms in face and stiff hands in the morning. Any help would be greatly appreciated. Thank you!
 
Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
21 years old. >>> way too young for ALS
twitching in my right arm. >>> twitches can be anything, or nothing at all
body start to cramp. >>> not a presentation of ALS
hands went numb >>> ALS does not feel numb
emg ncv of the arms which came back normal >>> rules out ALS
emg ncv on my legs came back normal >>> rules out ALS
body wide twitching and cramping, >>> ALS does not start body wide
stiff hands in the morning >>> In ALS, muscles are limp, not stiff
spasms and tics in my face. >>> never heard of this in ALS

You don't have ALS. Good luck finding a diagnosis with your doctor.
 
Thank you both so much for your help and replies to this. Makes me feel much more calm and relaxed :). Thanks again and praying for you both!
 
Back in January you told me that I had helped and you would not keep doing this.

Please get back to your doctor and get help with anxiety. We have done all we can and you don't have ALS.

All the best.
 
Well -- Several of us have tried to share our experience with you and your fears.

The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.

We do empathize with your fears, but there is no more we can help you with at this time.

This note is not to deter you from your investigations, but just not on this forum.

You asked, we answered, so please move on.

If you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!

Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practioner what you are feeling as well as how you are feeling.

No need to reply. Goodbye and best regards.


-----
Max
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...
 
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