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Author Topic: TERRIFIED of Bulbar ALS.  (Read 321 times)

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Offline SkittishSari

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TERRIFIED of Bulbar ALS.
« on: July 02, 2014, 12:15:58 AM »
I am terrified I have Bulbar ALS. I have been googling way too much, including on the ALS Forums which is just so dumb. I am 34 (almost 35) so I know the odds are extremely low. Still, I feel like sometimes I have trouble swallowing, that I have a lump in my throat sometimes, like I can't speak clearly or that it takes a lot of effort, that my neck is weak, etc. All of these symptoms come and go. Sometimes I feel fine. Today I don't have speaking or swallowing problems but feel instead like I am constantly biting my tongue and cheeks which I think must be because of some kind of muscle wastage.

Anyway, please help. :(

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Offline MrTweeprise

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Re: TERRIFIED of Bulbar ALS.
« Reply #1 on: July 02, 2014, 06:55:57 PM »
Hey! While I'm not extremely familiar with that specific kind of ALS (believe me... I've had my share of other ALS scares), I can tell you that your symptoms are very similar to what I used to deal with when I was very anxious. I know Dr Google likes to believe otherwise. Difficulty swallowing and feeling like there was a lump in my throat was very common. It isn't among the most common of anxiety symptoms, but I found many others who suffered similar symptoms with their anxiety. Don't worry about ALS! a the symptoms aren't nearly this subtle. It would be obvious. Your on and off sensations shouldn't worry you a bit. In the meantime, best of luck with your anxiety. Always remember that worrying about a disease is often worse than getting the disease itself.

-Jeremy
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Offline thenomnomnomicon

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Re: TERRIFIED of Bulbar ALS.
« Reply #2 on: July 02, 2014, 07:48:09 PM »
I am terrified I have Bulbar ALS. I have been googling way too much, including on the ALS Forums which is just so dumb. I am 34 (almost 35) so I know the odds are extremely low. Still, I feel like sometimes I have trouble swallowing, that I have a lump in my throat sometimes, like I can't speak clearly or that it takes a lot of effort, that my neck is weak, etc. All of these symptoms come and go. Sometimes I feel fine. Today I don't have speaking or swallowing problems but feel instead like I am constantly biting my tongue and cheeks which I think must be because of some kind of muscle wastage.

Anyway, please help. :(

No.

Don't start pointing out exceptions.

You do not.
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Offline Descent

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Re: TERRIFIED of Bulbar ALS.
« Reply #3 on: July 02, 2014, 11:47:22 PM »
All of these symptoms come and go.

It's anxiety.
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Offline Roman

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Re: TERRIFIED of Bulbar ALS.
« Reply #4 on: July 03, 2014, 07:56:59 AM »
Bulbar als is extremely aggressive and it does not come and go once it's there it's there and doesn't leave. Descent is right it's anxiety
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Online ShawnW

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Re: TERRIFIED of Bulbar ALS.
« Reply #5 on: July 03, 2014, 09:59:01 AM »
I can say I could have written your post.  I never had these issues until I read about them.  Believe it or not very few FP know as much about *** as the average board member over at BFS.  It's just not common enough...and when a family doc sees weakness or odd reflexes they will send someone out for a referral.   It first starts with a twitch, or some jelly legs, or we trip and then we google.  Then we obsessively study, go to all the wrong places, and read about 1 in 10 million kinds of presentations that may or may not be true.  Then we stop sleeping, eating, start self testing constantly, and we go into a state of catabolism...our bodies break down and we injure ourselves with self testing.  Our nervous systems are hyper-exciteable and we have all sorts of scary symptoms.  We finally go to a neurologist and he tells us to settle down.  We don't believe him and seek out a sub specialist...he says the same thing.  Then we begin to heal.

I can this I wasn't worried about bulbar until I got cleared by the second neurologist.  Then my mind went to where he didn't check.  Next thing you know I am analyzing my speech, swallowing, breathing etc.  Everything seemed off.  This is in our heads.  It's in your head and the quicker you realize that and get some help for your anxiety the quicker you will heal.
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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: TERRIFIED of Bulbar ALS.
« Reply #6 on: July 05, 2014, 08:26:16 PM »
Shawn, that's pretty much what I am going through. I got an MRI for other "symptoms" and it came out clear, but an MRI can't detect ALS so that is what I start worrying about, first in my leg (it's now fine) and when I google about it, I read about Bulbar and then subsequently develop symptoms. The problem is, the symptoms feel real.

I don't want to google this, but if my symptoms either diminish substantially or disappear altogether with a xanax, does that mean it is not ALS? I mean, ALS symptoms don't come and go like that, even in the beginning,  right?
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Online ShawnW

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Re: TERRIFIED of Bulbar ALS.
« Reply #7 on: July 06, 2014, 03:49:04 AM »
Symptoms that diminish with use of Xanax are highly suggestive of anxiety.  Physiologically speaking it should worsen with Xanax if it were a neuro nasty.
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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

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