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ShineOn42

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Hi Everyone,

This is my first post. My name is Brian, and I'm 22 years old.

Symptoms began at the beginning of May this year (2006). I began noticing a very strong urge to throw up/wretch/gag everytime I went to talk or project my voice, yawned, or finished eating. At first we thought it was a stomach thing because of the throwing up. However, barium swallow test and CT scan of upper chest and neck came back normal.

The GI specialist prescrbied me Nexium to see if it helped, thinking I had some kind of reflux. Nexium kind of took the edge off at least after meals. However, it also helped me zero in on the trigger for the wretching/gag reflex:

It was something with my throat on my sinuses, I thought, because every time I opened my mouth wide and strained my tongue, it would irritate my gag reflex and I would gag. Also, breathing in deeply contracted the muscles of both my throat and around my soft palate, causing the gag reflex to go off.

This is strange because so long as the muscles in my throat are relaxed, I can brush my teeth and reach the back of my throat without a problem. It's more based on the way I contract my tongue, throat muscles, or the way I breathe.

I went to an ENT specialist a few weeks ago (specialists have a long waiting list, and it took me five months just to get that far), and he suspected it's something neuromuscular. (I had kind of suspected this anyway. A month and a half ago, I saw on Wikipedia that an overactive gag reflex is a sign of ALS--thus my anxiety.)

He did give me a small prescription of Neurontin (300mg daily), and it does seem to take the edge off a little. I tend to be able to breathe better and talk easier. Before, I couldn't really function outside my house at all for the five months since graduation because the gag reflex was so strong.

Still, yesterday I went to Borders! First non-doctor visit day out since this whoe thing started. The problem is still definitely there, but I can at least get a handle on it with the medicine. I also take Sudafed to clear my nose (so I don't have to contract the muscles as much to get the air I need and aggravate the reflex).

I am, however, very worried. Being a shut in for a good 6 months now, these things start to mess with your head, especially after reading about the link between ALS and gag reflexes. At one point I forced myself to hop on one foot 50 times just to convince myself that my legs are still strong. It probably sounds stupid, but the situation is getting to me.

Other symptoms...I've noticed my feet tend to get cold a lot. And twitching around my body. Also, today I noticed my jaw began to feel tight. It could be a temporary thing, and it could be something I'm causing for myself by giving in to the anxiety, but I have no idea.

However, the primary problem has without question been the thing with the gag reflex. It doesn't come and go, the way some ALS symptoms apparently do. It's been constant since May. When I want to demonstrate it to a doctor, it takes me about ten seconds to contract the muscles and strain my tongue iin just the right way to wretch a little.

Is this common to ALS at all? Does this sound like something else? Any feedback would be appreciated because I'm starting to go out of my mind. The appointment with the neurologist isn't for another three weeks, and and five months of sitting and waiting, I'm kind of at the end of my rope here.

Thanks,
Brian
 

BWk

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Brian,
I won't tell you to "just relax" maybe you can't, but until the docs. give you a definite diagnosis.[And yes they do take forever it seems] try to stay in a positive state of mine it could be something else. Try to stay busy at whatever you do in the meantime. Barry
 

Al

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Brian. Stop relax and take a few deep breaths. Staying indoors for 6 months is a bit much. Get out smell the roses. If worse comes to worse you'll thank me later. AL.
 

ShineOn42

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Thanks, guys. Like I said, with the Neurontin, I'll be able to function out of the house more. I'll probably go out with friends this weekend.

But I'm still curious--about the gag reflex thing? Does that sound typical or atypical? Maybe I shouldn't ask, but I can't help myself.
 

janf

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Gag reflex

Hi Brian I'm so sorry you're having these problems. I have been diag. with ALS But the last neuro said I still had one ray of hope I go back to Atlanta ga. Nov. 10 to Dr. Glass and Neuro clinic. I've been dealing with this for 9 mos now (symptons early than that.) It takes a long time to diag. ALS because for one thing Doctors don't enjoy giving the death sentence.( sorry to be so blunt but, that's how it is.) I have many symptons you name it I got it. I gag when I cough and open my mouth wide to brush my tongue. You seem to have excessive gag problems but remember everyone is different, but very similiar. Don't stress to much, stress will make it worse and make you crazy. You are very young I'm old 54 ha ha :-D . When this started I felt just like you my: phrase was wait wait hurry hurry see dr. soinso and next dr whatumighthim (got it). Anyway, I pray a lot for Gods peace and I will pray for you now. Find a friend that loves the father above (sorry to be preachy but this has made me calm. I was having panic attacks ,cloustophobic stressing all the time. Now I have peace and I'm believing for the best enjoy your life, relax you can't change anything yourself. Find a SPIRIT filled church this will help you stay focused on the important things,but, remember christians aren't perfect.. Brian you may already know all of this if so, forgive me for talking so much ok..:oops: If you would like to send me a private message you can. I'll leave for California Next Wed. will return Mon. Where to you live? remember chin up live today for today tomorrow will take care of itself. God Bless! JanF Oh and Brian ask ANY question you like anyone here will be glad to help.....OK
 

CindyM

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Hi Brian-Sorry I missed this thread yesterday but I hope you see this message and believe you are not alone. It is nerve-wracking to wait for a DX and it takes time to get one. There are quite a few of us in this prediciment. Please take the adivce of others on this forum and try to occupy yur time and mind with happy activities and thoughts. Gagging constantly is a misreable way to spend your day but try to find ways to not let it get you down. I hope you find even part of the day that you can enjoy. Keep in touch, OK?
 
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