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Wonderingaboutthis

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Sep 6, 2014
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Learn about ALS
Country
CA
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Ontario
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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!

----------------------------

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!
 
Hey man let me start off by telling you that I am in the exact same place as you right now. I know it's difficult to keep your anxiety in check but likely you will get a response that either says you don't have it, OR go see a doctor and there's a very good reason for this. First off, when it comes to diseases like this there is no doctor on earth that's going to take your symptoms seriously until the symptoms become so clear that they cannot be ignored. Let me explain what I mean: I've been sittin in fear with a number of symptoms for about a month now that are getting worse. Twitching in my legs, weakness, extreme fatigue in my tongue and swallow muscles that make it very difficult to talk, among others BUT I can still talk. If push came to shove I could scream, or run down the block. and until (hopefully never) the day comes that my foot stops working, or I have slurred speech from muscle death in my tongue, noone is going to entertain or sympathize with my symptoms even though I KNOW they are getting worse AND line up with a MND like ALS. I still have to wait for the day to come where I can no longer speak to be able to get a referral to a neurologist OR find any validation on this forum for that matter. So the big question is: What do we do until then? You do WHATEVER YOU CAN to pass the time or get your mind off your fear. I let my fear consume me into a basket case laying in my bed for days and you know what that accomplished? NOTHING. You, me, and the other 100's of people who are worried sick are just going to have to wait. Let's all wait together.
 
That's an interesting perspective and I like that you replied but I'm more interested in hearing what someone who knows more about ALS especially bulbar and or has it, says. Just for some insight.
 
GAGGING was mentioned with bulbar so I'm particularlily interested in hearing what they have to say on it...
 
Hello, Wondering. Thanks for being so honest about the anxiety.

First, I think Wesker17 has really blown it by saying doctors--and people in this forum--won't take your symptoms seriously. As for me, I've definitely got better things to do at 2 AM, but I'm taking you seriously because I believe everyone on this forum deserves to be taken seriously. As for doctors, my wife (RIP) was a doctor for 20 years before dying of ALS, and I know that they take you seriously, too. They didn't take up medicine just to dismiss patients' concerns. And, after all, missing a diagnosis can easily lead to a malpractice lawsuit.

Second, you described the doctor's primary neurologic exam perfectly. When a motor nerve is stricken by ALS, its associated muscle goes limp. The fact that you had a strong tongue response shows that many neurons from your brain to your tongue were working fine. If there were any doubt about it, he would have continued investigation with further tests.

Third, trust your doctor, he's the one who excelled in pre-med, passed med school, and has years of experience with these things. If you needed more work, he would have ordered it. In short, I think your anxiety is real, and you should find an anxiety forum as well as a therapist for anxiety.
 
Thank you VERY much AS! I am sorry for your loss. I would like strongly to agree with you, I mean that certainly is the HOPE right? That doctors wont jsut dismiss concerns for fun!

As someone who's partner was not only a doctor, but as someone who's had first hand experience with this disease I feel grateful and consoled and will look for a therapist soon. It was suggested to me in the past to be honest.

Regarding the gagging, does that sound like bulbar though? Just wanted to be clear on that particular symptom because I noticed someone hear saying people with bulbar choke cough and gag.
 
Atsugi, though I disagree with your generalising of my statement, I can see your point. But there's a difference between a 'symptom' you experience and a 'sign' that a doctor can observe; and UNTIL a sign becomes apparent enough to warrant doctor concern, it's likely that it won't be taken seriously. I've even read posts written by you literally drawing the same paralell that I did in my statement above in other words such as: "If you approach your doctor telling them you think you have an MND they will think you are crazy". As far as me 'blowing it' I sincerely hope that isn't the case because I'd like to know that this community would welcome me if I wind up being diagnosed in the future.
 
I'd just like advice on gagging. This thread is sort of being turned in another direction. thx
 
Hi wondering, my husband flew free of the monster of bulbar onset ALS in April this year.

The symptoms you describe, I can happily assure you, sound NOTHING like the very early stages. I am aware of all the intricacies of the early stages I can assure you.

People with ALS do experience a lot of gagging and choking and ALSO have all the other bulbar symptoms which you don't.

I sympathise with your anxiety, thank you for being honest about it.

ALS is incurable and terminal, finding out now won't help you. Dealing with your anxiety will help you enormously regardless of whether or not there turns out to be some other underlying illness. Please see a doctor about your anxiety and happily let this forum go.

Wishing you all the best in sorting this out.
 
The gagging you see mentioned is generally a result of not being able to chew swallow properly and not the primary probelm
 
Gagging is not a symptom of ALS it is the result of many factors going on at the same time. Just like falling is not a symptom of ALS it is the result of your muscles not working properly
 
I have bulbar ALS and my first symptom was getting strangled easily, wrong pipe like you said, I didn't feel it but once a doc saw my tongue tremors, they were pretty sure what I had, I can't talk anymore but I can still walk and do most things for myself. I thought I had a throat problem, didn't know what ALS was until I googled my symptoms. I doubt you have ALS. Zoloft helped me with anxiety while I waited to go to the clinic.

Janie
 
Hi Janie, Thanks for your response and I'm sorry to hear of your challenges. I'm 24 and am being told it's rare in my age group so that's of coure reassuring. In terms of the "going down the wrong pipe thing" it's only happened a total of three times that I can actually remember and this was over a month or so period. So not everyday.

In terms of my speaking, I'm not slurring, but I have a funny feeling in my tongue and when I'm speaking I feel as though my tongue is like "stopping" me from saying certain things...it's hard to explain. Again, the internist and doctors have examined and found no signs as they say.

But what worries me is this speaking thing and "feeling" in my tongue, what if the reason doctors don't notice anything yet is being it just isn't pronounced enough and is just beginning. I guess my fear is of it getting worst.

What is a tongue tremor exactly and is it something you can actually notice and are aware of? Or were u having these "tongue tremors" and didn't even know until the doctor seen it?
 
wondering honey I have to kindly let you know something.

The people here are dying, they can barely type. People like me have lost or are caring for someone dying.

The way it works is - you come and ask us your questions, we give you our honest opinion which we have done. You do not have ALS in the opinion of everyone here.

Of course we are not doctors, so please seek help, but please, I beg you - don't respond with any more details of your symptoms. It's time to accept we won't change our answers. It's not that we are offended, we have answered.

Wishing you all the best as you move on from here
 
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