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CB1977

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Hey everyone, I just wanted to give you all an update. Here is where I am today-

Energy- better, probably by 45% since 1 month ago. (I wanted to start with something pos.)
Muscle Twitching- Same, still having it all over body, gets worse when my muscles are relaxed (laying or sitting)
Tongue- Worse- This is the one I just dont get. The scalloped edges are caused by some type of tongue thrusting. I am worried because I have read that if your neck muscles weaken, you will thrust your tongue subconciously to try to balance and compensate for the weakened neck muscles. The left side of my tongue is actually painful now to touch and looks pretty bad. I went to dentist and he said its tongue thrusting but does not know what could be causing it.
Neck and back pain- Same- This is the big one for me. It has been going on for 3 months. The pain is mostly in my left Trap Muscle, but is also in the front neck muscles. It gets worse toward the end of the day or especially with physical activity.
Breathing- Sometimes when I take a deep breath I get a weird feeling in the left side of my chest/torso. It feels like the feeling you get when your stomach growls except is related to my breathing. This happens more when I am laying down.

I have 2 questions- In ALS, could the pain in my neck be a result of some type of atrophy that just isnt bad enough yet to actually see? I have worked out for many years, I am a built person, so I expect that it would take longer to have noticable atrophy?
How can I know if this muscle pain is actually caused by atrophy?
Cant they see this on a MRI?

Question 2- I have had symptoms for about 3.5 months. My appointment for OSU Neuro is in mid Oct. If they do an EMG on my trapizuis and other neck muscles and it is normal, how much water does that hold in discounting ALS or other types of MND? Is this to early and should I wait for another few months?

Thanks to everyone who has read and replied to my questions. I hope everyone is feeling OK and having a good day today.

CB in Ohio
 

BethU

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Hi, CB ... I have never heard of atrophy causing pain. It is associated with weakness. As I understand it, ALS causes pain from contractures and cramping, but atrophy doesn't "hurt."

"Tongue thrusting" sounds similar to teeth grinding when you're asleep, a nervous habit.

BethU
 

patricia1

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I have atrophy in my neck and weakness and the pain is so bad
So yes with weakness there is pain. because .the muscle is working so had to hold up my head/

pat
 

BethU

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Thanks for the correction, Pat. I'm not there yet, so I guess I was just hoping it wouldn't hurt.

BethU
 

CB1977

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Hi Beth, hope you are doing well out in LA. USC really gave it to the buckeyes!

From what I have read, atrophy in the neck and back can cause pain because you cant relax those muscles as they are holding up your head and back. I am just wondering if anyone had an initial onset such as this?

CB in Ohio
 

CB1977

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Patricia- have you been diagnosed with ALS? If Yes, did you have the pain as an early symptom or is it something that has shown up later? I have only had this for 3.5 months, but it is certainly not getting better. Do you have any visible atrophy in your neck or back?
 

patricia1

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I have A LS over 9 years And the pain in my neck started last year when I noticed I coundnt read a book too long or bend over and pick things up without horrible pain.
I have noticed muscle loss in shoulders and back this year.
Pat
 

CindyM

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Hi Pat- sorry to hear all this. Just wondering if you tried the neck brace that Landscape (? I think) posted here. I was wondering it this sort of brace is helpful. Cindy
 
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