Wonderingaboutthis
New member
- Joined
- Sep 6, 2014
- Messages
- 7
- Reason
- Learn about ALS
- Country
- CA
- State
- Ontario
- City
- Pickering
Hello to all,
I first want to start my message by saying I am extremely understanding of the patience you all have with this forum. I can only imagine how many of these "types" of requests you've been getting due to all the heavy media coverage on ALS/the ice bucket challenge.
I just want to speak for all of us who have anxiety and other panic disorders etc. It's a very hard road to deal with as well. Nothing in comparison to what ALS sufferers go through of course, but it's still no cake walk and we don't mean any harm or to trivialize your challenges or ALS in anyway by asking our sometimes "silly" or irrational questions. I just felt like that was important for me to put out there because I've read a few posts and stickies and I really want to make sure you guys know how much the replies and support is appreciated it!
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My particular concern: Bulbar. I have no muscles weakness that I notice in the limbs and I've seen a doctor who's tested not with an EMG but with basic strength and endurance tests and has said he see's no signs of ALS. My arms and longs hands and feet seem to be fine.
The biggest concern I have is Bulbar and I've specifically read someone here with ALS say in these exact words "Many of us cough, choke, and gag." I don't have choking except for the ocassional "wrong tube" when u drink something which only happens here and there which I think is normal I suppose.
But I have an EXTREMLY sensitive gag reflex lately and you guys say you all gag. I remember one night gagging for about 30 minutes and nothing at all came up, no vomit just gagging. I of course went to bed and was fine the next day. I was having anxiety that night I will admit. I forget what it was over to be honest.
Lately though, this "sensation" to gag has been with me almost all day every day. I don't actually gag, dry heave, or throw up, I just have this very sensitive feeling in my throat where I feel like I either WANT to gag or am GOING to gag. It's basically an over sensitive, hyper active gag reflex. I also tend to feel the sensation after eating.
I've had a lot of twitches in my lower left eyelid over the past week now...sometimes I notice it, other times I don't.
Where speech is concerned, I'm not slurring at a point where anyone has asked me why I "sound" like that or anything but I have noticed myself having trouble pronouncing certain words lately..it's almost like my tongue is tired etc...I can't really explain it. I do a bit of miss pronouncing is all which isn't really the usual for me. I will also be honest and say that I ONLY have noticed all three of these symptoms over the last 3 weeks of researching and learning about ALS.
I realize my symptoms are not "durastic" but in my mind I feel ALS still has to start SOMEWHERE even for those who now have it. So in those very intitial stages maybe it was the same as mine....a constant sensitive feeling in your throat with the feeling to gag....a little bit of twitching in the face...some mispronounced words..and then over time it probably got to the level of "slurring" where it was actually noticeable by others and more diagnosable. So you see, my fear is, what if im in my ititial stages? especially when u guys on here have said you do gag cough and choke....I've also noticed having to cough while eating a little bit...like I will swallow and then cough...this has not happened everyday or every time I eat but it happened once the other day.
My doctor checked my tongue and other bulbar related nerves...like he made me squeeze my eyes shut and tried to open them with his hand and couldn't, he looked at the palet of my mouth and said it was symetrical and very responsive. He made me push my tongue against my cheek and fight his hand and said I had a "very strong tongue."
Anyway....I just wanted some insight on what you guys think especially with the gagging sensation stuff.
Thank you kindly.
PS. I should also mention I'm a 25 year old male and I do generally suffer from anxiety. Felt I should be honest about that.
Thanks again!
I first want to start my message by saying I am extremely understanding of the patience you all have with this forum. I can only imagine how many of these "types" of requests you've been getting due to all the heavy media coverage on ALS/the ice bucket challenge.
I just want to speak for all of us who have anxiety and other panic disorders etc. It's a very hard road to deal with as well. Nothing in comparison to what ALS sufferers go through of course, but it's still no cake walk and we don't mean any harm or to trivialize your challenges or ALS in anyway by asking our sometimes "silly" or irrational questions. I just felt like that was important for me to put out there because I've read a few posts and stickies and I really want to make sure you guys know how much the replies and support is appreciated it!
----------------------------
My particular concern: Bulbar. I have no muscles weakness that I notice in the limbs and I've seen a doctor who's tested not with an EMG but with basic strength and endurance tests and has said he see's no signs of ALS. My arms and longs hands and feet seem to be fine.
The biggest concern I have is Bulbar and I've specifically read someone here with ALS say in these exact words "Many of us cough, choke, and gag." I don't have choking except for the ocassional "wrong tube" when u drink something which only happens here and there which I think is normal I suppose.
But I have an EXTREMLY sensitive gag reflex lately and you guys say you all gag. I remember one night gagging for about 30 minutes and nothing at all came up, no vomit just gagging. I of course went to bed and was fine the next day. I was having anxiety that night I will admit. I forget what it was over to be honest.
Lately though, this "sensation" to gag has been with me almost all day every day. I don't actually gag, dry heave, or throw up, I just have this very sensitive feeling in my throat where I feel like I either WANT to gag or am GOING to gag. It's basically an over sensitive, hyper active gag reflex. I also tend to feel the sensation after eating.
I've had a lot of twitches in my lower left eyelid over the past week now...sometimes I notice it, other times I don't.
Where speech is concerned, I'm not slurring at a point where anyone has asked me why I "sound" like that or anything but I have noticed myself having trouble pronouncing certain words lately..it's almost like my tongue is tired etc...I can't really explain it. I do a bit of miss pronouncing is all which isn't really the usual for me. I will also be honest and say that I ONLY have noticed all three of these symptoms over the last 3 weeks of researching and learning about ALS.
I realize my symptoms are not "durastic" but in my mind I feel ALS still has to start SOMEWHERE even for those who now have it. So in those very intitial stages maybe it was the same as mine....a constant sensitive feeling in your throat with the feeling to gag....a little bit of twitching in the face...some mispronounced words..and then over time it probably got to the level of "slurring" where it was actually noticeable by others and more diagnosable. So you see, my fear is, what if im in my ititial stages? especially when u guys on here have said you do gag cough and choke....I've also noticed having to cough while eating a little bit...like I will swallow and then cough...this has not happened everyday or every time I eat but it happened once the other day.
My doctor checked my tongue and other bulbar related nerves...like he made me squeeze my eyes shut and tried to open them with his hand and couldn't, he looked at the palet of my mouth and said it was symetrical and very responsive. He made me push my tongue against my cheek and fight his hand and said I had a "very strong tongue."
Anyway....I just wanted some insight on what you guys think especially with the gagging sensation stuff.
Thank you kindly.
PS. I should also mention I'm a 25 year old male and I do generally suffer from anxiety. Felt I should be honest about that.
Thanks again!