ShineOn42
New member
- Joined
- Oct 26, 2006
- Messages
- 2
- Reason
- Learn about ALS
- Country
- Uni
- State
- OR
- City
- Estacada
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
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