My Story--Please read, a few questions

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My Story--Please read, a few questions

Postby Neville86 on July 17th, 2014, 1:04 pm

Hello all

When my health anxiety started 10 years ago (27 now) it started with a twitch in my temple which, according to the search engine of 10 years ago (Yahoo?) could be a stroke. From stroke I worried about having an aneurysm (who knows why?) and from there it began and hasn't ended. From brain aneurysm I went to brain tumor, had a "vacation" of two years on lexapro, lexapro "pooped out" as these drugs often do, obsessed about becoming schizophrenic, this obsession turned into an obsession over committing suicide (a misbelief that these things run in families, grandfather committed suicide), an obsession over colon cancer because i was constipated and having narrow stool where during the worst of it I lost twenty pounds in a matter of weeks, an obsession with oral cancer after discovering keratotic layer of attached gingiva on gums (it took seven docs telling me it was normal to believe it) and now, finally, ALS because of a tongue twitch I discovered 8 days ago. This is by far the hardest obsession Ive had to deal with.

8 days ago I bit my tongue, looked in the mirror, tongue out, and saw a twitch on the left side (area opposite of where I bit). It was flickering pretty violently, in one spot and really didn't seem to want to stop. I immediately recorded a video of it (which Ive posted) and then hit Google. I knew Google was a bad idea, because it's always been a bad idea, but I didn't know how bad of an idea it was. Between this site (which for the most part has been helpful, although Ive read damaging stuff on here) the ALS forums, etc, I have convinced myself that I have something nasty. Over the course of 8 days I have read more about fasciculations, fibrillations,atrophy, etc then ever. A few things I've picked up in my research:
1) The information is contradictory ('tongue fascics are benign' 'tongue fascics are never benign')
2) the information is damaging (see above, also "discovering" what a fib is, videos of MND tongues online that resemble mine etc.
3) The information is lacking (very little real info seems to be out there on BFS and benign twitching--most seems to be firsthand patient info)
4) the information cannot be correctly interpreted unless one acquires a special lens to interpret it--ie, a medical degree (reading about fibs and then looking for fibs on your tongue, you will find "fibs"

All that being said, I'm at a point now where I literally go insane and admit myself to a psych ward or I stop some of my damaging behaviors. Looking in the mouth everyday with a flashlight seventy times a day is no way to live, and it's my belief that you will always find something if you're looking. As someone mentioned on here, if she looks for more than thirty seconds tongue at rest it will move, and then she goes on line and reads a malignant descriptor--bag of worms, etc--and then she looks back at her tongue and sees what she thinks is a bag of worms and freaks out, mo' anxiety, mo' twitches, mo' problems. So, a good start would be to cut back on the checking. To not look ever is pretty tough and unrealistic, but to make a deal with myself is probably a good start.

Over the course of 8 days I've experienced a twitch that's pretty constant, cannot be felt, and is localized to one spot. At first it twitched when the tongue was outside the mouth only, and now, the twitch has become gradually more faint and seems to be activated when my top lip touches my tongue (it's crazy, I touch my tongue and they start firing). Since last night, I've noticed dents popping on the same side of the tongue in the center when the tongue is at rest, although who knows what Im looking at here and if the tongue is even at rest? Who knows?

I don't. Looking any one of these things up brings up a crap load of stuff you didn't want to know. Fibs are weaker, fascics in ALS are localized (oh wait, no they are not, oh wait yes they are), fascics in the tongue are benign, fascics in the tongue are never benign, etc. It's no wonder that someone like me with a twitching tongue muscle (a tongue that continues to be abused and overused) freaks out when trying to get info on whats going on in his body: THERE DOESNT SEEM TO BE ANY CONCRETE RULES TO THIS STUFF. It's damaging to your mental health to try and find them; hell, even the weakness before twitch thing has been debunked. Where do you turn? HOw do you escape from this hell? What do you do?

I think theres a lot of things you have to do: you have to stop checking; you have to realize you and no one on this board (except maybe Twitchydoc, right?) is a doctor and even if there are a few docs on this board or justanswer.com or whatever they can only see and say and do so much from a video and descriptions; you have to learn to accept and deal with the anxiety, anxiety is a very powerful emotion, and if it just rests in you and is "free floating" (like it does me) and gets worse when you're fighting with your sister, after coffee, etc.it will look for an outlet, and that outlet for a lot of us has become our bodies, I found in my experience with my "noisy" body that it becomes considerably less "noisy" the less I dwell on it, most of my symptoms have disappeared when I move on (a little gross but pertinent: I was obsessed with getting colon cancer and had diarrhea for three months straight over summer break--I'm a teacher--NO BREAKS, when I returned to school all went back to normal) ; finally--the hardest thing--learn to live with uncertainty. We all fear the big thing. And believe me, if theres a thing to fear, its that thing. Just typing this now makes me want to vomit.But in the end, we all could you know--but we also all could die on an airplane, choke on our cereal, have a heart attack during orgasm, be murdered by a serial killer, be murdered by a "cereal" killer (he mistakes you for Captain Crunch), get a baseball to the side of the head, ride a bike off a cliff and get a stick through the throat, have a TV fall on us, *beep* off an elephant that the caretaker assured you was happy go lucky, have an aneurysm while reading a Raymond Chandler novel, fall through the ice in the summer (tough), choke on ice cream, see a bird and yell to the bird as a joke only to realize that the bird is a robot sent back in time from the future to murder you and your family and it was just about to give up and go back to the future until you yelled at it and it spotted you--

-Neville
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Re: My Story--Please read, a few questions

Postby Neville86 on July 17th, 2014, 1:20 pm

One last thing: I don't know why BFS does what it does, and I'd say most of us have no clue either. But I do know what's "wrong" with most of YOU: ANXIETY. An scientific experiment for you I conducted recently to prove my point: my girlfriend (she is literally the best, always so calm and understanding and willing to be a guinea pig) stuck her tongue out and rested it as best she could on her lower lip: it started fasciculating on the edge. I asked her
"Doesn't that freak you out?" And she shrugged "should it?" I started down my path again with my "google knowledge" and she just shrugged her shoulders and said "but like what are the odds really? Even if they are 1/100 that's still not bad. I trust my body to tell me when something is really up."
No anxiety means no care for her.
Has google, doc oz, oprah, webmd, etc gotten us away from this kind of thing? Something to think about.
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Re: My Story--Please read, a few questions

Postby TwitchyDoc on July 17th, 2014, 3:39 pm

The thing is, her tongue was not truly fasciculating (there was even a study years ago dealing with bulbar signs, in more than 200 controls none has tongue fasciculations). Few people can stick out the tongue and still keep it relaxed. It is normal for tongue to show movement of fasciscles (muscle bundles) but as you saw in my video, the fasciculations are a bit different. They happen when the rest of the tongue is entirely still, they are irregular and often you can faintly feel them. If you stick out your tongue partially, very likely there will be spots twitching persistently until you release the tongue. But this has nothing to do with fasciculations.
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Re: My Story--Please read, a few questions

Postby Neville86 on July 18th, 2014, 8:09 am

........................
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Re: My Story--Please read, a few questions

Postby TwitchyDoc on July 18th, 2014, 3:42 pm

Neville86 wrote:........................


Well said..
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Re: My Story--Please read, a few questions

Postby Nytviolet on August 19th, 2014, 10:39 pm

This may sound odd, but I often think, "just put me into a medically induced coma for three months and run your bloody tests...wake me when it's over.". Day to day living is awful with fear gnawing at the nape of your neck almost nonstop. I too have found that when I'm truly involved in a project, my mind is free! Then later, I'll feel that slight weakness in the arm and leg and all bets are off. Another unrelated topic: when car-crash victims or football players are in danger of paralysis from an injury, they DO put them into a medically induced coma, and lower their body temperature. I often wonder if this has been tried with newly dxd *** patients. Perhaps it would stop progression and allow the brain/spinal cord to " reboot". I apologize for babbling, but I think of this often, and wonder if it would have any merit. BTW, you're right; all tongues twitch whenever you stick them out. Be Well :mrgreen:
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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Re: My Story--Please read, a few questions

Postby Pascal35 on August 20th, 2014, 10:47 am

TwitchyDoc wrote:The thing is, her tongue was not truly fasciculating (there was even a study years ago dealing with bulbar signs, in more than 200 controls none has tongue fasciculations). Few people can stick out the tongue and still keep it relaxed. It is normal for tongue to show movement of fasciscles (muscle bundles) but as you saw in my video, the fasciculations are a bit different. They happen when the rest of the tongue is entirely still, they are irregular and often you can faintly feel them. If you stick out your tongue partially, very likely there will be spots twitching persistently until you release the tongue. But this has nothing to do with fasciculations.


Could you please post the link from this study so we could also have a view of it?
Neville said that his girlfriend's tongue twitched after she rested it to the lower lip. This is more or less what is going on with my tongue too.
After an effort or a bite or a tongue strength test when I rest the tongue into my mouth there is a twitch in a specific area on the right mid side which fasciculates for a few times and then stops. I also have a tingly feeling while this happens. This is happening over the last month.
Maybe I irritate my tongue because I am bending it and doing some crazy stress related things with it and there is a specific nerve that I have irritated.
At any case I have read that the nerve involved in the tongue is only one so if there is a serious issue with the tongue then twitching won't be the only symptom. I believe there would be weakness and slower movements of the tongue.

Sorry for my English I hope my point is well explained.
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Re: My Story--Please read, a few questions

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