Is this tongue Atrophy?

[Skyhawk]

Hi Everyone,

5 years ago I started getting twitches all over my body etc. I saw a Neuro as I become obsessed with ALS and he told me I did not have it at all. After a while the twitches went but over the past 3 months they have come back with a vengeance. I feel my face muscles are very heavy at times and most of my body especially my arms. I feel when I stopo moving that my muscles treble for about 3-5 seconds then come to rest.

I just had a full body CT and Brian MRI with full blood tests and nothing found. A Neurologist did an examination of me and she said don't be worried.

However the tip of my tongue has started to feel tingly and is now twitching. I have notice what to be a sunken part towards the tip. Is this atrophy and the start of Bulbar ALS?

Would appreciate any help as I am worried bout of my mind. I also know only way to say for sure is EMG but do these pics look like atrophy and ALS of the tongue.

Thanks
Mod note pictures were not visible

 

[Vincent]

If you do not believe a qualified neurologist why would you believe us. You do not have ALS. Stop obsessing.
Vincent

 

[Skyhawk]

Is this tongue atrophy?

Hi Everyone,

5 years ago I started getting twitches all over my body etc. I saw a Neuro as I become obsessed with ALS and he told me I did not have it at all. After a while the twitches went but over the past 3 months they have come back with a vengeance. I feel my face muscles are very heavy at times and most of my body especially my arms. I feel when I stopo moving that my muscles treble for about 3-5 seconds then come to rest.

I just had a full body CT and Brian MRI with full blood tests and nothing found. A Neurologist did an examination of me and she said don't be worried.

However the tip of my tongue has started to feel tingly and is now twitching. I have notice what to be a sunken part towards the tip. Is this atrophy and the start of Bulbar ALS?

Would appreciate any help as I am worried bout of my mind. I also know only way to say for sure is EMG but do these pics look like atrophy and ALS of the tongue.

Thanks

 

[Skyhawk]

I have made a new post with pics - Could a moderator please delete this thread

 

[4tloml]

Cannot tell one thing by your pictures. My husband's started with tongue, but it takes a neurologist to diagnose it. HE showed US the special type of fasciculations and atrophy--we would have never recognized it. See a neurologist. If it's been 5 years, my lay-person thoughts are that you would have many more obvious symptoms by now, but go get reassured by a doctor.

 

[Atsugi]

SKYHAWK, it's good that you understand you are obsessed with ALS.
It's also good that you listed your symptoms.

A. twitches all over my body >> this is not how ALS presents. In ALS, twitches are localized to the particular muscle that is dying.

B. face muscles are very heavy >> never a problem in ALS. In ALS, there are no heavy feelings. When a muscle becomes limp, useless and paralyzed, it doesn't feel anything at all.

C. muscles tremble >> this doesn't occur because of ALS.

D. tongue....feel tingly and twitching >> Again, ALS doesn't tingle.

E. Your tongue does not look atrophied. In ALS, atrophy occurs AFTER the muscle has been useless and unused for weeks and months. If you can still talk, you can't have atrophy.

Since you've already seen doctors who told you you don't have anything to worry about, but you're still worried, you should consider seeing a psychologist to discuss your obsession.

You don't have ALS. And nothing you posted makes it appear that you might get ALS in the future. You're good to go.

 

[Janie H]

I can't lift my tongue, can't touch the front of my teeth, can't stick out my tongue or speak, that's tongue atrophy.

 

[ECpara]

My husband has tongue atrophy, which came after he could no longer speak or eat. To add to Janie's accurate description; he can no longer spit, lick his lips, or swallow (including the gallons of saliva produced daily). To sum it up, tongue atrophy sucks (he can't do that either)!

 

[Skyhawk]

Hi guys

Thank you all for tolerating me and passing on your advice. Just to give you an update here is what has happened since I posted.

I was feeling more and more weird - I felt when I wanted to move my arms, legs, open my jaw etc. I felt there was like lag or momentary blockage from my brain to the limb and when the movement actually happened. The delay felt like a tiny tiny delay, however I felt weird. What worried me was my arms and legs felt like I had worked the muscles as if I had been down the gym and sometimes it felt like someone had punched me in them and they felt tired when I walked. Also when I felt this in my arms I would sometimes find it harder moving them. This concerned me and again I was convinced ALS was occurring so I went to see the Neuro again.

I also explained to her I felt my muscles were shaking under my skin but it wasn't visible and it was getting worse. She explained that people with ALS CAN feel fluttering of the muscles and she has had patients with ALS that have said they could "feel" ALS with fluttering muscles etc.

She said having blood tests, a body CT and brain MRI would only rule out things like cancer/MS etc. and these could NOT pick up ALS. She said one of the golden tests for ALS is a EMG and Nerve Conduction Study. She ordered a test of my upper body as this was where I said my concerns were in my arms, tongue etc.

I had the NCS done and then they stuck needles into my neck, left hand, left forearm muscle, Bicep, right forearm muscle and hand. The examiner said to me "I should not tell you this as it's down to your Neuro but I am not seeing any ALS signals at all. I cannot find any evidence of ALS. What I can tell you is that you have Carpel Tunnel in both wrists with a Double Crush in both elbows" (this I knew already for the past 5 years.) The findings were also nerve impingement from C4- C7.

I took the results to my Neuro and she said "There you go we have ruled out ALS so relax"

Despite being told this I still feel I have it but they just haven't tested me enough. I know this thought is not reasonable but I have this gut feeling something is very wrong and I know I am right.

I apologise to all of those here who are genuinely suffering from this dreadful condition. It must enrage those that have it and those who have family/friends with it to read people like me posting and bleating, for that I apologise but even as I do say this, I am still convinced I have it. Even now as I type my left bicep is tiring badly as I type.

 

[Nikki J]

We never said you can't feel twitching. I certainly feel some of my twitches. But twitches are irrelevant. You have had a neuro clear you. You know you were obsessed with this 5 years ago too. Sorry about that. Really. But this is not the place for you now. Thanks for updating and now move on as much for yourself as for us. This is a bad place for those with ALS anxiety. It makes it seem as if ALS is the norm and focuses your attention on a disease you do not have. Consider blocking this site on your computer so you won't be tempted
Good luck

 

[Skyhawk]

Thanks for your comments Nikki, I agree with you and lots of love to you x

Best regards.

 

[affected]

I do want you to block this site and leave like Nikki suggests but I'm going to make one comment which other anxiety-ridden people will read anyhow.

It sounded to me like in your last post you made quite an attempt to say that your neuro was saying many of the things we say here were wrong. NOT SO - you have done a good bit of twisting there.

Please don't reply to this message, I am not intending an argument with you

I'm so glad for you that it has been displayed so clearly to you that you do NOT have a single ALS symptom and I wish you all the best as you move on.

 

[Dusty7]

"I took the results to my Neuro and she said 'There you go we have ruled out ALS so relax'. Despite being told this I still feel I have it..."

And there is a white woman in Spokane, head of the NAACP, who identifies herself as African-American.

And George Will said, "I identify as the Cubs Gold Glove-winning first baseman..."

Delusions are everywhere; we all have them. But we must fight against them, especially when it comes to medicine and our health.

Live long and prosper, T'Pau