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rickson407

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Jul 16, 2013
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Learn about ALS
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FLORIDA
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ORLANDO
Hi All,

As you can imagine from the title I'm a bit anxious. This past May I just randomly couldn't swallow. When I say I couldn't swallow I mean I would chew and chew and chew my food and it's like the swallow reflex didn't kick in. This of course freaked me out and it is now the middle of July and I've still had no such luck. I've been to the Emergency Room three times and all the doctors I see tell me that it is because of stress/anxiety/depression, etc. More less telling me I'm a mental case and this is all in my head.

I'm definitely scared now about bulbar onset ALS and it is reeking havoc on my mind and probably just making the situation worse. Funny thing is that I have no problems eating chocolate, chips, and some other things. All the symptoms I've read about bulbar onset ALS is that it usually starts out as slurred speech and then progresses to dysphagia (trouble swallowing) because the tongue doesn't do what it needs to do to get food back. I have no trouble chewing my food or moving my tongue around or anything like that. My speech is definitely not slurred or anything either but still I'm a nervous wreck thinking I could possibly have this.

One person in another thread said that its not the act of swallowing the food that the patient has problems with, it's the fact that the food goes back to quickly and then he/she can choke and aspirate. This being very true with liquids.

I don't know but if someone could PLEASE give me some peace of mind it would be greatly appreciated. Thank you so much in advance. :wink:

P.S: I respect and mean no harm by this post. I don't mean to make a mockery or anything so please don't think this. I just truly need some input and someone to ease my fears. By the way: I'm a 26 y/o male and have been relatively healthy up to this point.
 
You and me both :wink:

I've been having perceived swallowing issues since last November along with clicking in my throat , muscle twitching, tinnitus, back pain etc. Nothing horrible has happened to me yet.

If you think it might make you feel any better, set up an appointment w/ a neurologist, but unless you have weakness in your hands, legs, or slurring of speech, he'll/she'll throw you out of the office.
 
I mean all the research I've done so far on bulbar onset ALS is that normally speech is effected first and then the individual doesn't necessarily have trouble initiating a swallow but when they swallow something is up with their pharyngeal sphincter (maybe different medical term) and that can cause them to aspirate. But in most cases people have difficulty speaking, tongue fasciculations, and all that before the trouble swallowing? Maybe I didn't understand it correctly, idk. Google is a blessing and a curse!
 
Instead of the ER - why not consult your GP and get referred to an ENT.

I seriously doubt you have ALS, but I do believe you've scared yourself silly. There are many reasons why swallowing can be adversely affected - so why not see a specialist to figure it out as opposed to jumping to conclusions?

No one here can tell you what's precisely causing your problem.
 
@rickson407:

I've been to the Emergency Room three times and all the doctors I see tell me that it is because of stress/anxiety/depression, etc. More less telling me I'm a mental case and this is all in my head.

I would tend to agree with your Doctors at this point.
They are the EXPERTS on the field of Medical Sciences, aren't they? If they say it's NOT ALS/MND, why would you think otherwise?

Peace to you.
 
Well I'm only worried because this has went on for a few months. I figured I would be back to normal but there is plenty of people out there that have dysphagia for no apparent reason at all that go and go and go to the doctors and have numerous tests. I mean bulbar onset ALS just truly freaks me out but everything I've read about bulbar onset ALS doesn't seem like I have it other than the fact of my swallowing issue. It seems that in bulbar onset ALS that that particular symptom comes last and the slurred speech, atrophy of tongue, and all the rest come first. I was just honestly looking for advice and someone to try and ease my mind. I guess when you focus on swallowing so much that you kind of make it a concious action and if your anxious or stressed right before you eat, just forget about it because it's not going to happen. I truly don't mean to make anyone angry or upset by my post because I know each and everyone of you on here are either living with ALS or have a loved one that is so please again, don't think I'm trying to make a mockery or waste anybody's time.
 
Rick son,


I don't think you're making a mockery, nor do I harbour negative feelings about you and your swallow concerns.

Simply put, I just believe you ought to get off this site, stop thinking you have a fatal disease, and consult your own doctor. Being here, or elsewhere on the World Wide Web will not give you the peace of mind you are seeking. It will simply feed the turmoil and fear you are having.

In my estimation, peace of mind comes from the inside out... Not from the outside in.
 
Thank you Elaine! I truly appreciate your honesty and integrity. I wish you all the best in your journey and God Bless you! Yeah, I'm probably just making things worse on myself by being on here and trying to self diagnose myself. It's just hard not to do that when you worry so much about different aspects in your life but I'm a firm believe that God isn't going to put anything on us that He knows we're not strong enough to handle and endure. I will follow your advice, but just for peace of mind, this doesn't sound like typical bulbar onset ALS?

Thank you again, so much. God Bless you and everyone that is suffering from this terrible disease. I plan on being a HUGE advocate for it after this struggle since I have read a lot about it. I have two friends whom both lost their father's to this ruthless disease and there needs to be more funding and research for it in my opinion. Again, thank you!
 
@rickson407:

Let's say you have or feel a lump in your throat which is benign but...you don't know it's benign.
You feel it and you freak out and get scared. You start thinking the worse and you assume (incorrectly) that it's malignant.

You open an account at a Forum for Cancer patients trying to get answers about your "health problems". People at that Forum are not Doctors but try to help you answering your questions to the best of their abilities.

You go to see some Oncologist and, upon examination, he tells you he thinks that lump in your throat is not carcinogenic or malignant.
You still have your doubts and go back to that Cancer Forum looking for "answers"...

What do you think this soul searching is going to cause you?

It's going to increase your anxiety which is going to skyrocket and, in turn anxiety is going to take over your mind making you firmly believe that you indeed have a malignant tumor in your throat.

See what anxiety does to your mind and body?


Regards,
 
I understand that completely Carlos and I agree with you 100%. This whole time while I've been experience this "symptom" I never once clicked on ALS. It wasn't until I went and looked up "trouble swallowing" that I saw where it had popped up "Bulbar ALS Onset" and of course that got my mind intrigued and I plunged into the depth of the World Wide Web. I had typically been going to EHealth Forum speaking with individuals about this symptom because we are all experiencing it but no diagnosis as of yet. So I do apologize. I just honestly wanted peace of mind and I can tell Carlos that you are HUGE in this forum because I actually read some of your past posts to people on Google and you more less were very upfront and honest. Especially about "Bulbar Onset ALS" and how it affects the speech and slurring of words first. I believe it was you that had said that somewhere and if not I apologize for being mistaken.

Anyways, thank you so much for your honesty as well. I truly appreciate it and I know how frustrating it may be to deal with "people" like myself but I just wanted clarification on the initial symptoms of "Bulbar Onset ALS" from someone experiencing it.
 
A speech pathologist is also a very good consult to have if you are truly concerned about swallowing issues...If I was you I would listen to your doctors and the advice you have received from the good folks here and run with it....You dont want to go down this road...trust me.

Take care

Robynn :)
 
Thank you so much Robynn. I totally agree with you but this Bulbar ALS has me just freaked out. Apparently my age and the fact that only 25% of ALS patients start out like this points AWAY from the fact that I have this but still I can't shake the fear. My parents seem to think this is all in my head. It's crazy how the mind can do such things...:-(
 
Not a problem...I sent you a message on your profile page :)
 
I am new here and not sure how to start my own post, but I just want some advise while I wait for some tests, about a year ago I started to have some twitching in Radom spots on my body. About a month after that I noticed a small spot on my tongue has facsticulations . Went to a neurologist. Who then preformed three separate emgs two in my body one on my tongue witch was done under my chin, all completely normal. As well as my clinical exams. I must also add that I feel I have been having speech issues, my husband thinks. Sound the same as always. For about 6 months after all was checked out, it was pretty much gone. Till the end of December of 2012 it stated to creep up again, so in march I saw my neurologist again who again did an exam and said it was normal. So I came home and things seem t wax and wane. My husband suggested I get a second opinion so I did today. This neurologist also say my exam I s normal but he is worried about the fasticulations in one small part of my tongue, he did mention als on the list of things that cause fasticulations. What do you guys think, should I be scared. Any input would be great! I'm am very scared I am 33 years old and am pretty healthy. Thank you!
 
Bailey,

You ought to start your own thread.

Did you ask the neuro what can cause twitching and he rhymed off a list of conditions including ALS or did he only mention ALS? Did he specifically say he is worried? What did he say the next step will be?
 
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