Does this sound like als to any of you? Bulbar or limb onset

[Barbie]

really Bailey? you seriously filmed your tongue?

You think you have atrophy and twitching in it? Well, you don't.

You are absolutely, positively being a hypochondriac. And all you other people our there who are comparing their tongue to hers--you are hypochondriacs too!

Bailey--you have been given a clean bill of health--no one but you "hears" your voice difference--your tongue is 100% normal. Please get a grip. YOU DO NOT HAVE ALS, I am 100% sure. you needs to rejoice and get off the internet and this site.

 

[affected]

oh no Barbie, guess what I wasted a minute of my great day here and checked my tongue! I can't be a hypochondriac though, because I thought, what a pretty tongue that is ... hahaha

The first time I checked my PALS tongue, it looked like a sock full of worms, the fasiculations couldn't be missed and were covering it completely, and he couldn't hold it out of his mouth as it made him gag.

I better go have a little dance with the dogs to make my day more worthwhile now :shock:

 

[Bliz]

I can see the fasciculations in that one spot in the centre but it is not like ALS fasciculations look like. The MND ones are typically diffuse, widespread across the muscle as the supplying anterior horn cell is degenerating.
I have had the same and I do not have ALS - though there are no definite rules, benign fasciculations tend to be stable in location, just like yours. If you had a flickers all around the surface of your tongue, then I would be worried. This seems like one motor unit irritation.
PS: I have had it for more than 6 years.

PSS: I have had fasciculations all over my body: arms, hands, shoulders, neck, chest, legs..you name it. Can I be sure it benign? Not absolutely as this year a few new studies very published but on the other hand, they do mention that it is seldon "more than a few months" when fasciculations predate other abnormalities.

 

[Baileygirl80]

Actually Barbie my own neurologist pointed out the fasciculations to me that is why he had ordered another emg for me as we'll as a brain MRI, I have had these issues for a year and a half, while I know that als is not super high possibility for me as last year all my emgs and clinical exams were normal, it is still none the less scary and all I was doing was looking for advise from people who know, and who knows more then someone who has it. I'm in no way a hypochondriac. I see you care for someone with als, but until you ever experience any symptoms of something a devastating as als you can not imagine how scary it is. Seeking comfort from others is what this forum is about is it not, I can understand getting a bit frustrated with some of the spammers on here or the people on here who do not even have one symptom of anything, that just read about als and are paranoid of getting it. But please don't lump everyone in to that category just because they don't meet the textbook version of something. I am in no way trying to make anyone mad here just biding my time till I can have my tests done and move on with whatever it is be it benign or not.

 

[Baileygirl80]

And as far as my taping my tongue that was for my dr to see and have on file . I thought as long as I had it, I would put it up here for others to look at! I don't or would not normally tape my tongue!

 

[YummyDrFood]

Bailey,

I really think Barbie is just trying some tough love to shock you out of your health anxiety. I'm going through the same struggles with distressing symptoms and looking for a diagnosis as you are, and I actually appreciate the people here, even when it seems like they make light of what I'm going through. I know that they are doing it out of concern for me.

That said, you have to admit that your tongue film is still a better love story than Twilight. I can't wait for the sequel "Tongue 2: The Lickening"

 

[Debd4l]

Hi,

I watched your video and that does not look like a tongue fasic to me..The tongue is so hard to keep still! Mine does a similar thing in the center and I can stop it for a few seconds by trying really hard not to move it. Your tongue looks a lot like mine overall and I do not have an ALS diagnosis. My EMG was normal. I do have other muscle twitching though all over. I think as others have stated usually tongue twitching in ALS is more constant and not just in the middle there..Best of luck to you on your journey..When in doubt check in with your doctor again.

 

[Baileygirl80]

Hi debd41, I too have twitches all over randomly. Even the center of my upper lip will sometimes! Crazy stuff

 

[Barbie]

Bailey, I wasn't trying to diss you, but your fears are completely unfounded. You said "Went to a neurologist. Who then preformed three separate emgs two in my body one on my tongue witch was done under my chin, all completely normal. As well as my clinical exams. I must also add that I feel I have been having speech issues, my husband thinks. Sound the same as always. " you said the 2nd Neuro said the same. though the guy did mention ALS as he listed diseases that have twitching connected to them.

so you have fixated on the worst possible disease.

You do not have symptoms of ALS.

From the World English Dictionary

hypochondria (ˌhaɪpəˈkɒndrɪə)

— n
Also called: hypochondriasis chronic abnormal anxiety concerning the state of one's health, even in the absence of any evidence of disease on medical examination

"I see you care for someone with als, but until you ever experience any symptoms of something a devastating as als you can not imagine how scary it is" Now that is a really stupid statement...

Since you are just biding your time here as you said, you need to realize that the PALS and CALS who answer you are not just "biding our time" we are living with this 24/7. You are not. plain and simple.

 

[ottawa girl]

Barbie,

I could not have said it better myself. You rock!

 

[Baileygirl80]

I will seek support elsewhere thanks to all of you for your replies , if I knew how to delete my profile I would. Thanks again

 

[Grateful]

Support does not = encouraging you to believe that all the tests you have had done are wrong, and that your doctors are wrong as well, and that you really do have a fatal disease.

I do understand that it is terrifying, but your fears can destroy you almost as well as ALS can; that is why the people here have tried to help you to understand that...

 

[Baileygirl80]

Had my MRI and emg, MRI normal, emg clean he Did my right leg and arm, my left arm, all the way up my spine and base of my neck,next to my nose and right in the tongue. He said no als. Now I'm working on my anxiety issues. That will take awhile. But working on it. Thanks for listening to me and know that you and everyone who suffers from this horrible disease are in my thoughts an prayers!

 

[Grateful]

Really glad to hear it, and you are absolutely right; it does take time and it does take work. I wish you the best of luck!

 

[Debd4l]

Glad to hear your EMG was normal. They sound like they were very thorough. They only did my EMG on my leg. Now that you have had your tests I hope that you can focus on what might be other causes of the symptoms you were experiencing..Sounds like you are starting to address your anxiety, that is a good place to start. Best to you.