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Author Topic: Scared to death by obvious lip and tongue atrophy, please help  (Read 269 times)

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Online Rasalhauge

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So, as you all are paingully aware by now I think that I have ALS (Bulbar onset none the less). Today I examined my mouth, as I do quite often, and noticed the atrophy I´ve dreaded for long. It is aparent in my tongue, and there is quite alot of denting when at rest (none of the pics truly depict that) and my lower lip has started to shrink, which leads to a crookedness when I open my mouth. So, judging by the picturs linked here, would you guys agree that I actually have some atrophy (notice especially how right side of lower lip is thinner). I´ve also noted that I have some dents in my left half of face when flexed (like making a face), in the cheek. And that is not there in my right side of face. I can´t believe how I could manage to become even more certain of Bulbar ALS, but this realy is it for me. I just can´t take this anymore

http://imageshack.com/a/img856/8772/5stq.jpg
http://imageshack.com/a/img837/7395/ryjw.jpg
http://imageshack.com/a/img856/7007/3dhh.jpg
http://imageshack.com/a/img823/3360/3h6oa.jpg
http://imageshack.com/a/img853/2623/0xu8.jpg

I have constant twitching, speech dificulties and on top of that (as the nail in coffin) atrophy of lips and tongue...
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“There is no greater sorrow than to recall in misery the time when we were happy.”

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Offline thenomnomnomicon

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Re: Scared to death by obvious lip and tongue atrophy, please help
« Reply #1 on: June 18, 2014, 09:54:02 PM »
I reviewed every photo.

You do not have atrophy. Your tongue literally looks more normal than mine.

Dents do not constitute atrophy either. Dents are never *** atrophy.
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Ph'nglui mglw'nafh Cthulhu R'lyeh

Offline Lindsay2427

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Re: Scared to death by obvious lip and tongue atrophy, please help
« Reply #2 on: June 18, 2014, 11:20:58 PM »
You look completely normal. Your obsession over *** is tricking you into seeing what you think is symptoms.
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Offline ShawnW

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Re: Scared to death by obvious lip and tongue atrophy, please help
« Reply #3 on: June 19, 2014, 12:04:54 AM »
The only thing that has atrophied is your ability to assess your own body.  Those dents on the side of your tongue are caused by your teeth.  That is normal especially in the anxious.  I have them as well. 

I told myself I wouldn't respond to this post because honestly we are enabling your insanity at this point.  Obviously, I didn't stick to that.  You are anxious, the chronically look for solace here.  You might get a few minutes of rest then you are back at it.  Stop.  You do not have ***.  Nothing you have said or I have seen says otherwise.

When do you plan on getting help for your anxiety?
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline SkittishSari

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Re: Scared to death by obvious lip and tongue atrophy, please help
« Reply #4 on: July 01, 2014, 11:35:42 PM »
How are you doing on your fears of this? I am in the same position, young(ish) and terrified of Bulbar onset ALS. I feel like my symptoms kind of wander around; sometimes I can't swallow, sometimes it is fine, sometimes I feel like I can't talk, sometimes it is fine, etc. But the worry is always there.
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Online Rasalhauge

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Re: Scared to death by obvious lip and tongue atrophy, please help
« Reply #5 on: July 07, 2014, 06:02:35 AM »
How are you doing on your fears of this? I am in the same position, young(ish) and terrified of Bulbar onset ALS. I feel like my symptoms kind of wander around; sometimes I can't swallow, sometimes it is fine, sometimes I feel like I can't talk, sometimes it is fine, etc. But the worry is always there.

I can relate to the wandering of symptoms, and personally I think it is because of hyperawareness. At least I hope that´s the reason behind it all=) My symptoms is greatly exaggerated by my focus on them, and the more I think about it the more I "feel" it. I think that bulbar ALS is one of the trickier diseases, because symptoms start of so vague. But it is also an extremely agressive disease, so all symptoms would relentlessly progress. There would be no intermittent about them at all, if symptoms fluctuate from one day to another chances are greatly in favor of anxiety.

I´m working hard at practicing what I preach though=)

I think the diversity of symptoms is a great indicator of anxiety or other mental problemsm rather than a MND.

As I write this I notice a profound sense of fatigue in my tongue and jaws, along with severe twitching of the tongue (been there for several months now) and a slowness of the tongue. It could be due to ALS, but it is far more likelly caused by a sinister combination of stress/anxiety/hyperawareness/depression and even a moderate pollen allergy. Getting a diagnosis of bulbar ALS, or any ALS/MND, at my age would be EXTREMELY rare, whereas anxiety and stress is not.
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“There is no greater sorrow than to recall in misery the time when we were happy.”

- Dante Alighieri

Offline SkittishSari

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Re: Scared to death by obvious lip and tongue atrophy, please help
« Reply #6 on: July 07, 2014, 10:13:42 AM »
And I can clearly see that YOU do not have ALS, but I can't see that with myself, with more or less the same symptoms and same risk. I agree that it is hyperawareness (when I am feeling rational). This whole thing started with my leg, and when I was focusing on my leg, it felt weird and weak and twitchy. Now, I'm focusing on my mouth and throat.

By the way, could you have GERD of any kind? I know that does not help my throat situation.

How is the mental healthcare in Sweden? It is sorely lacking in Denmark. I got waitlisted for a CBD course of 10 sessions, which I completed a month ago, and here I am, so I can't say it was super duper helpful. I was have this idea that Sweden is better for everything though (this is because I am not Danish. ;-) )
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