Old 01-13-2015, 07:51 AM #1 (permalink)
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Default Tongue twitching constantly at rest.

Hi there, I've recently noticed that my tongue constantly twitches at rest and while sticking out which makes me considerably worried about ALS as I hear this can be one of the initial symptoms. When it is at rest it will jerk every few second which I hear is normal but it will also create small dimples especially in the middle as if a pin had been pushed on it, sometimes this dimple will stay for a few seconds too. I do not have any slurred speech as far as I'm aware, at least no-one has mentioned that I do. I have a lump in my throat feeling, but this has been put down to anxiety. (I have very bad HA and am resuming therapy on the 27th of this month to correct that).

My muscles also ache quite a lot after very little strenuous activity, I do not work out a lot so that could be an explanation. My left arm is also considerably smaller than my right, however it has always been my weaker arm but am only noticing the size difference recently. I don't have any trouble swallowing at home, but in public places such as restaurants or exams but I put this down to anxiety.

For additional information I'm also only 18 so the odds are definitely in my favour, I'm just very worried about my tongue. Also, I cannot feel these tongue twitches/movements at all. I intend to post a video of my tongue twitching later on today. I've visited my GP about it and he said it seems relatively normal and did facial nerve tests such as trying to force my eyes open, if I can raise my eyebrows, and puffing my cheeks out to check for resistance all of which he said were normal.

Just looking for a second opinion really and I have read the stickies so I do not think my muscle ache could be attributed to ALS, but if it could be let me know.

Thanks for any help in advance.
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Old 01-13-2015, 08:26 AM #2 (permalink)
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Default Re: Tongue twitching constantly at rest.

Sluggy, please do NOT post a picture of your tongue twitching.

Reread your post, and then really re-read the stickies. You have HA, not ALS, and you don't need us to tell you this. The folks here are dealing with a horrific fatal illness that drains them of energy and, for many, makes typing extremely difficult. This is where we come for support. We are happy to answer serious questions, but HA is NOT something we can help you with.

OK, if anyone here DOES think you have ALS, they will speak up. Trust me, they read. If you get no more responses, there is no need to ask further. Best of luck with your treatment.
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Old 01-13-2015, 08:34 AM #3 (permalink)
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Default Re: Tongue twitching constantly at rest.

Apologies, I'll leave the video of the tongue twitching. I assumed my question was serious, but obviously not. Thank you for your reply, and I cannot even think to imagine what you are going through, the tongue twitching just got me shaken up and was slightly worried about not getting referred to a neurologist for a twitching tongue as I hear it's odd and rarely benign if the twitching is in the middle.

Regardless, thank you for your reply and I wish you all the best for the future. You have no idea how elated the words "You have HA, not ALS" make me feel, I'm looking forward to my upcoming therapy session and again, all the best to you, and anyone who reads this post.
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Old 01-16-2015, 05:28 PM #4 (permalink)
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Default Re: Tongue twitching constantly at rest.

Hi again, sorry to post again here, I can't even begin to fathom how hard it is for you guys. Today I was just testing what my body can do as is the case with health anxiety and while I can stand on my tip toes with my left foot for a while, I cannot with my right. It's not impossible, just far more difficult than my left. I'm right side dominant and this has worried my greatly, is this muscle atrophy and ALS? I want to see a neurologist but I'm in the UK and the waiting times are horrendous. Wondering if I should pay for a private appointment
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Old 01-16-2015, 07:49 PM #5 (permalink)
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Default Re: Tongue twitching constantly at rest.

Sluggy, with HA you could be talking yourself into new symptoms. To by very frank with you, a diagnosis of ALS is a death sentence no matter at what stage you receive it. Waiting a few months won't change it. On the other hand, if only seeing a neuro now will calm your fears, then shell out the money and do so. We can't diagnose you. Best of luck.
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Old 01-17-2015, 06:05 AM #6 (permalink)
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Default Re: Tongue twitching constantly at rest.

Hi sluggy! I have HA as well and worry about tongue fasciculations. I'm a nurse and have researched ALS more than I care to admit. Let's support each other, but away from this forum. Would you like my email adress so that we can talk?
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Old 01-17-2015, 08:55 AM #7 (permalink)
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Default Re: Tongue twitching constantly at rest.

Your HA is obviously the culprit here for all your worries. It only makes things worse. You're way too young to even think you have ALS - a 1 in 1,000,000 chance under age 30, and the further away from that age, the even less the odds. Also, bulbar multiplies it by another 4 because only about 25% ofPALS have this type. So I would say your odds are about 1 in 10,000,000. Why don't you go by a lottery ticket? There your odds are greater. Good luck.
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Old 01-17-2015, 11:11 AM #8 (permalink)
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Default Re: Tongue twitching constantly at rest.

Thanks for the responses, I think my HA was the culprit here. I woke up this morning to test myself again. To my surprise my right foot was far better than it was yesterday, and my muscles in my calf are all still intact. I also checked my abs and my right feels a bit softer but as I check every other day, I don't think muscle can atrophy that fast.

I'm having trouble swallowing in terms of food getting stuck in my throat and needing two swallows to get it down, but as the sticky says it's not a symptom of ALS, it's definitely a symptom of anxiety though. Got a sore throat, not a symptom, I can go on. My twitching that I can feel is mainly in my legs, it's annoying but not als I guess.

I'm going to see my GP to see if he'll refer me to a neurologist for a final word
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Old 01-18-2015, 01:25 PM #9 (permalink)
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Default Re: Tongue twitching constantly at rest.

Sorry to post again, I know you're all very busy coping with ALS/MND, but my fears this morning and throughout the day have gone through the roof. My speech seems slurred in the sense that words that use the letter "r" feel like they come out slurred, my family haven't said anything so I don't know if it's me perceiving that my speech is slurred or not.

I'm seeing my GP tomorrow with all of my symptoms and going to ask for a neurologist referral. I want to settle this once and for all and get a definitive answer. Though if I am diagnosed with MND, I don't think I'll cope. I've said all my all be it short 18 years I'll never let a disease kill me. I don't like not being in control of my own life.
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Old 01-18-2015, 02:43 PM #10 (permalink)
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Default Re: Tongue twitching constantly at rest.

Sluggy, as you wrote, (" Though if I am diagnosed with MND, I don't think I'll cope.")

Frist, if by the wildest chance you were, being you are mostly likely just another anxiety patient, think about that statement to those on this Forum who have been diagnosed with ALS/MND... they cope everyday.

Then you wrapped up by saying,

("I've said all my all be it short 18 years I'll never let a disease kill me. I don't like not being in control of my own life. ") Anxiety is in control of your life!

See your GP tomorrow, maybe (MAYBE) he'll refer you to a Neurologist and being from the UK it may be a while before you see one. So, if you do see a Neurologist there is no further reason to post your new daily symptoms here. This is not an anxiety Forum but do try one until then.
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Old 01-18-2015, 02:53 PM #11 (permalink)
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Default Re: Tongue twitching constantly at rest.

Apologies for consistently posting here with daily symptoms. I'm an active user of nomorepanic which has helped me out a lot in the past, but recently my fears of physical neurological conditions have gotten on top of me. It's always been my phobia, but recently this flare up of symptoms have taken me to a dark place. I seem to be getting every symptom I read about. I don't know if my speech is actually slurred or not, it just feels all wrong, certain words I can't seem to say but people understand me fine.

Maybe it's just all in my head, I don't know. And that's the worst part for us anxiety people, the not knowing. Hopefully I'll get referred to see a neurologist, if not I'll go private for some answers.

Sorry again for polluting these forums with my crap, all the best to everyone. If on the off chance I am diagnosed with a physical neurological condition, I'll let you know. I assume there are some people with crippling health anxiety reading this read with a tick box matching all their symptoms.
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Old 01-18-2015, 02:56 PM #12 (permalink)
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Default Re: Tongue twitching constantly at rest.

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I seem to be getting every symptom I read about.
The point is that you do NOT have any ALS symptoms, you just think you do.

Stay at nomorepanic please, it has the possibility of helping you, this site has nothing for you I'm sorry we are busy dealing with the reality of the disease ALS.

Come back after seeing a neuro, but for your own sake stay off here now please.
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Old 01-18-2015, 03:12 PM #13 (permalink)
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Default Re: Tongue twitching constantly at rest.

Thanks for your response, I intend to until after I've seen a neurologist I thought difficultly swallowing and slurred speech were symptoms but I guess I'm mistaken. Thanks again for a your responses guy, best of luck.
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Old 01-18-2015, 03:29 PM #14 (permalink)
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Default Re: Tongue twitching constantly at rest.

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I thought difficultly swallowing and slurred speech were symptoms but I guess I'm mistaken.
There are particular difficulties in swallowing and slurred speech that are symptoms. Your type are NOT.
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Old 01-18-2015, 03:51 PM #15 (permalink)
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Default Re: Tongue twitching constantly at rest.

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There are particular difficulties in swallowing and slurred speech that are symptoms. Your type are NOT.

Tillie
Thanks for the response. I leave here a less anxious person than I entered.
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