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spacecowboy000

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I am a 32 year old male who's been worried I have ALS. I am here because my fears and research keep contradicting themselves. I wanted to ask real people who know.

I have been experiencing very frequent muscle twitches (legs and arms) but I've maintained muscle mass and in fact gained so I discounted that. I tested the nerve reflex on my feet and it showed normal. The pains and cramps I have in my muscles also come with numbness and tingling which I read I aren't consistent with ALS. I tested my grip strength in my hands that feel weak but it comes out to 45-50 kg. Average to slightly above average.

Today though I noticed I have rare but intermittent twitches on my tongue at rest. I can move my tongue normally it seems. It gets tired though and I think I see atrophy on the sides. I sound to myself lately I slur words but my friends, family, and coworkers don't hear it.

Does this look like the beginning of muscle atrophy of the tongue? I apologize if I've wasted anyone's time but I just want to put these fears to rest.
 

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Bestfriends14

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Oh the tongue pics...

Not at all. A scalloped tongue can be from dehydration. I have a scalloped tongue and do not have ALS. If you're sticking your tongue way out, like you are in your pic, you don't have atrophy, as atrophy happens AFTER the muscle dies, not before.

You don't belong on an ALS forum, which is great. I have no idea how you happened upon ALS as a consideration but do consider drinking plenty of water and gettting lots of rest. Go to your doc if you have continued concerns.

Take good care.
 

lgelb

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If other people aren't hearing you slur, you're not. Keep hydrated, consider the electrolytes in your diet, sleep and stress. Then take a walk through the arboretum or somewhere beautiful and consider your good fortune in being able to do that.

Put your fears to rest so they don't waste your life.

Best,
Laurie
 

Atsugi

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For what it's worth to any future visitors, tongues can get pretty ate up by many things. For me, my tongue was far worse scalloped than the photos above. Looked like cancer, I thought. Docs and dentists tried everything. A cancer specialist took one quick glance and dismissed it. Then I discovered the problem and solution myself:

My diet pill burned my brain. Phentermine increased my metabolism and decreased my appetite. Also caused my mouth to go hyperactive. I was sucking my tongue all night in my sleep, drawing the edges through my teeth. Bad pain, all day for months. Even six months after stopping the med, my mouth is still hyperactive. I learned to change the movements from sucking tongue and grinding teeth, to simply soft oscillations of the jaw.

So now I play show tunes by tapping my teeth all day. Weird, but no pain or damage. And not ALS.
 

GregK

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I will painfully restrain myself from the torrent of sarcasm searing thru my head...

Also for any future readers, please, please don't post tongue pictures.
To say they're useless is a gross understatement.

Thank you.
 

Bestfriends14

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Tongue pics are gross...I was too chicken to say so, though. Sorry OP!
 

spacecowboy000

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Thank you to everyone who responded. I again apologize if I have wasted anyone's time and for grossing out anyone with the tongue pics. You have helped ease some of my fears and I am beginning to realize that the majority of what I feel is probably stress related. i have been reading how much stress can effect the body and, like the DIHALS main post says, its about failure instead of feeling.
 

spacecowboy000

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Just wanted to thank everyone who helped me before. You helped me seek the attention I needed and I am getting answers. I have gone to my therapist to help with health related anxiety which should alleviate some of my worry and replace it with hope. I have gone to my GP, ENT and a neurologist. I explained all of my symptoms to them. New and old. Before I get to the details so far it has been just like you all said....Not ALS

I have still been twitching a lot....all over and especially after physical exertion. Newest place is my chin of all places. I have had twitches in my eye for years so I try not to think anything of it. Plus my GP said he thinks Im grinding my teeth at night so that could cause sore face and chin. I still have aches, tingling, pins/needles, and occasionally now a burning sensation. I know all these point away from ALS.

I have been lately dealing with a lot of breathing problems and thought that perhaps it was respiratory or bulbar. With the chin twitches, the speech/voice projection I thought was bad (which NO one can hear), and breathing I was worried. I had a chest xray and a MRI on my cervical spine....my lungs were clear and no issues on the MRI. My diaphragm and neck muscles looked all good. My GP noticed that I had a LOT of gas in my stomach on the xray and figured out my IBS/GERD was acting up again. My ENT looked at my tongue and throat. Came to the same conclusion after finding no changes in my tongue or in my voice. That alone helped answer why I was hurting. Again.....you all helped point me in the right direction . Away from ALS.

Finally to my neurologist who I found out later is actually listed here as an ALS doc. He looked at me and did a full clinical exam. Said my voice sounded ok, my knee reflexes were brisk but bilateral. No babinski or anything else. He looked at me and asked if I knew what ALS was...answered yes and he proceeded to tell me not to worry cause I dont have it. He ran blood work on me. The only things that were found were a low Vitamin D and my ANA was positive for possible auto immune disorder. (1:160 and Homogeneous)

I actually have an EMG scheduled this Thursday cause he wants to be prudent. However those words lifted such a weight from my shoulders. I guess a little part of me is still anxious about the EMG but after a doctor of 41 years with ALS experience tells you no....It's going to stay no.

I wanted to thank you guys again and I will keep you all in my prayers. If it's ok, I will update about my EMG after Thursday.
 
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lgelb

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Thanks for checking in, Cowboy. Of course, you can stop back with an EMG report. You might ask a dentist about a mouth guard at night for the teeth grinding.
 

spacecowboy000

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So I went to get my EMG today. They did NCV first on my left arm and leg. Everything looked good except for one instance near my left ankle but the tech said it was an artifact and re did that spot. I think he said that interference from the air could have caused it.

Then my emg happened. My neuro only did my left arm and it was looking ok at the beginning. He went from upper arm to lower. At first saying good and that it was quiet. Then he started wiggling it at times when he got to my elbow/lower arm/thumb. There was some noise after i would relax my arm...not a whole lot but some. He finished and I asked him was it ok. He told me to wait until next week so he could go over everything. I then asked him as I was leaving, "you didn't see anything really bad did you"? He responded, "No, I didn't see anything really bad".

I don't know why I am so anxious now after feeling so certain that it was going to go well. Especially after the clinical exam when he said for certain I don't have ALS. I do know that I have had numbness/tingling/pain in this arm before. Especially in the lower elbow, wrist, and pinky. I have over used it at work and gaming for years. I still though use it to type, game, and my grip strength in that arm/hand is still 110 like normal. Should I be concerned? Do you think he was possibly just placating/blowing me off until he gives me the bad news next week? I don't like feeling this way....especially after trusting him so much already.

PS - Totally wish I could edit my first post and get rid of the tongue pics....I am so sorry again you guys/gals.
 
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KimT

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Could be carpel tunnel syndrome but I think ALS is definitely off the table. If it had been anything close to ALS, he would have tested more muscles. ALS has a very distinct pattern. You cannot tell by "noise" during an EMG.
 

spacecowboy000

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Finally saw my neuro today.... We went over everything. Thank the Lord my NCV/EMG came back clean. Nothing remarkable whatsoever. He thinks it is BFS coupled with whatever auto immune something that's brewing. He has already referred me to a rheumatologist and wants to be kept in the loop. Thank you guys for helping me through this.
 

lgelb

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Good news! Thanks for sharing; it helps others who may have similar concerns.

It sounds like you are on the right path -- best of luck.

--Laurie
 
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