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sherlock

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Jul 15, 2014
Messages
14
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Learn about ALS
Country
US
State
NJ
City
New Brunswick
Hello, I'm a 26 year old male experiencing some bulbar symptoms. I currently have an appointment with my doctor next Tuesday, but I wanted to get an idea of where I'm at. For a while I was having problems where my tongue felt odd, almost numb. Out of the blue about two weeks ago, I started to experience dysphagia. Dry foods tend to stick at the back of my throat and go down painfully. Lose liquids like water go dien, but feel like they have to work past a lump. I cough a lot and frequently draw mucus into my mouth, and have general fatigue in my whole body. I have full motion with my tongue, and I only notice it wave or tremble if I stick it over my lower lip. Even then, not all the time. I get occasional trembling in my arms, legs, and chest.

I'm worried because it's getting progressively worse quickly, and I started to have some minor problems breathing (apnea at night, exercise intolerance). I've read the stickies and I'm still worried. I'm young and just met the girl I want to marry - I'm only here to ask if these symptoms are similar to any bulbar PALS. I'm sorry to bother you with this.
 
I have, I understand, and I'm sorry if I've bothered you. After hearing that my symptoms match bulbar onset I've been a wreck.
 
>After hearing that my symptoms match bulbar onset I've been a wreck.

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go see your pcp asap, don't use internet forums for diagnosis ...


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Max - Tuesday, July 15, 2014 1:48:45 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
I see him next Tuesday. I'm so scared I have this disease :k:(.
 
>I'm a 26 year old male experiencing some bulbar symptoms
>I'm so scared I have this disease :k.

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don't be. you are more likely to get polio
 
Luck usually isn't on my side :( I'll keep you all posted and thank you for the replies. Even if it isn't ALS, these are worrisome symptoms.
 
After hearing that my symptoms match bulbar onset I've been a wreck.

Excuse me? Where did you hear your symptoms match bulbar onset? Not from anyone here that is for certain. They don't match my husbands experience.

I do not know what is wrong with you but I can tell you to remain calm and be assured - if it's bulbar onset you won't be able to miss it, it will become extremely obvious with just a bit of time. Staying calm now and enjoying life is the best thing to do. Stay away from trying to eat mouthfuls of dry food, they are probably junk foods anyway.
 
Excuse me? Where did you hear your symptoms match bulbar onset? Not from anyone here that is for certain. They don't match my husbands experience.

I do not know what is wrong with you but I can tell you to remain calm and be assured - if it's bulbar onset you won't be able to miss it, it will become extremely obvious with just a bit of time. Staying calm now and enjoying life is the best thing to do. Stay away from trying to eat mouthfuls of dry food, they are probably junk foods anyway.

Tillie

Thank you, Tillie. From both my mother and I (Who found out I was thinking I had ALS and nearly drove up here just to talk to me about my anxiety problems). She thinks it was nice of you to respond, and I'm thankful as well. I'm also terribly sorry that your husband was afflicted by this terrible disease - I'll be sure to keep him in my prayers.

I went to my PCP today and he said it looked alright. He has a patient who just got diagnosed with Bulbar ALS, and he said I don't look -anything- like that. He's concerned because I have very mild tongue fasciculations, but he mentioned it could be any number of things. He's referred me to a Neuro, and gave me a mouthwash to help try and calm down the swallowing problems. I'll keep an eye on everything and make an appt with the Neuro as suggested.

He said the Neuro probably wouldn't even do an EMG because I'm not even close to being symptomatic. In his words "Nothing's 100 percent in medicine, but I'm as close to 100 percent as I can be that you don't have ALS."

Thank you all again. If there's any update, positive or negative, I'll post it and go on with my life in the meantime. -hugs-
 
I'm going to the neurologist in about three hours. I was so lucky to get such a quick appointment! I'm a little nervous, but my thought is that I'm in good hands. This neurologist has worked with ALS patients before as well as people with anxiety ;) . He's very well rated in the local area.

I'll post when I have an answer. I know us DIHALS drive you all crazy, but your honesty and candor is appreciated. You're all exceptional people dealing with a very destructive illness. I sincerely hope the next post of mine that you see is an all clear, and a respectful fair well.
 
>I sincerely hope the next post of mine that you see is an all clear, and a respectful fair well.

we do to! best of luck.


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Max - Friday, July 18, 2014 2:23:46 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
The doc took a look and did a bunch of clinical exam. No hoffman, no babinski, he slapped arms and calves and checked the tongue, no fasciculations. The fasciculations my PCP saw weren't really fasics... he looked when I stuck my tongue out. He checked the soft pallet, everything worked well - watched me swallow and said the muscles moved right.

He referred me to an ENT, wants to make sure I don't have any structural problems causing dysphagia (LPR, Laryngeal Web, Diverticula). He also referred me to a therapist, thinks I should get some help with any axiety issues. He gave me a very good idea of what kind of symptoms to look for, and to call him if I had any worries.

Thanks for cheering for me, Max :) I'll be cheering for you too. I'll be praying for all of you, and wishing you the best!
 
>I'm a 26 year old male experiencing some bulbar symptoms
>I'm so scared I have this disease :k.

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don't be. you are more likely to get polio

My mom has had both in her lifetime. I told her she needs to pick us out some lotto numbers.
 
>My mom has had both in her lifetime.

:-( that really sucks!
 
Stupid anxiety... still nervous with the swallowing. I get the clicking, the constant phlegm and cough, the lump in my throat, and now I'm seeing the ENT on Wednesday. I'm not sure what the problem is...

By the sound of it, it's not MND, but I can't shake that worry. You've all been very nice through this, and I thank you.
 
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