Those who know about Bulbar? 23 Year Old Male Super Concerned

[LA_boy]

Good evening folks,

I've done a good amount of searching through this site and don't want to waste too much of anybody's time as I know most people on here are dealing with this very serious illness etc.

I just wanted to know if any of you knew any rates or general stats on people getting ALS under thirty? I mean I know all the popular stats but I've learned from googling they don't seem true or accurate. My doctor himself kept hanging on the fact that I'm not in the right age demographic etc but I've read SEVERAL people on this site included who are in their twenties and have ALS. This scares me because it proves the age stats are somewhat of a lie or just not figured out accurately....

Secondly, what are the chances of getting ALS in the "Bulbar Onset" form? I know some people get bulbar onset as oppose to general ALS....

This is my situation: A few friends and I were having drinks a couple weeks ago at a bar and talking about the ALS Ice Bucket challenge and I seemed to be the only one at the table who didn't know what it was. My friends told me a bit about it which prompted me to research it and get super scared. I related the fact that I recall choking on my drinks a few times in the recent past and thought, "could it be ALS?" At this point I'm one worried LA boy! I generally just like to chill have fun in the sun and water and don't let much get to me. But for some reason the possibility of having this disease has taken over my life a little bit over the past few weeks.

I'm noticing several symptoms at this point, one main thing (only noticed twice now) was the feeling of food being "stuck" in my throat after eating...and of course I'm watching my speech carefully and have found some changes in it as well...again, nothing anyone can notice but I'm afraid it could be just starting and not too progressed yet.

My Doctor didn't want to refer me anywhere because he said he recently has a patient pass away from ALS and he knows a good amount about it. Having said that, he checked my mouth and did some neuro examining and said he didn't think this was even a concern.

Since then it's like every symptom of bulbar has appeared...food being stuck, trouble swallowing, choked on my saliva a bit, strange changes in speech.... Mind you, I didn't really notice any of these things before learning about it other then having acid reflux and choking on my reflux a few times at night in my sleep, and the occasional choking on my drink.

My doctor examined me twice and tells me I'm having anxiety but I don't think so...

Thoughts?

 

[Atsugi]

Listen to your doctor. You really shouldn't be here.
You don't have ALS.
You didn't describe ANY symptom of ALS.
You are obviously either A) having anxiety, or B) playing on this site, which is rude.
Either way, you don't have ALS and you will waste the time of anyone who takes the time to read and reply to your post. Not cool.
The chances of an under thirty person getting bulbar onset ALS are so low, the stats aren't counted that way.
The probability of an under 38 person getting ALS is one in 165 million.

 

[Dusty7]

Agreed. You don't have ALS or any symptoms of ALS.

 

[LA_boy]

Hi guys,

Thanks for the replies. To reply to what you said, I'm definitely not just joking around on the forum. I'm seriously concerned about this.

Two things I did not mention that you guys could maybe help answer just incase:]

1) I also have been getting a lot of twitches randomly in my face...my eyelid, my cheek, and a bit in the legs...again this isn't every second of the day but I've definitely noticed it a few days a day over the last couple weeks

2) I recently have been feeling like I have extra saliva in my mouth...it's wierd...like I have no trouble swallowing it or anything, but it definitely feels like theres so much more saliva....I read online that excess saliva is a huge indication of ALS...

Is that true ?

 

[MaxEidswick]

Well -- Several of us have tried to share our experience with you and your fears.

The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.

We do empathize with your fears, but there is no more we can help you with at this time.

This note is not to deter you from your investigations, but just not on this forum.

You asked, we answered, so please move on.

If you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!

Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practioner what you are feeling as well as how you are feeling.

No need to reply. Goodbye and best regards.


-----
Max
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

 

[Atsugi]

- twitches randomly in my face >>> Everybody gets twitches for many reasons or no reason at all.
- feeling like I have extra saliva >>> where did you read this?

You don't have ALS. Take it from several people who know, plus your doctor.

 

[LA_boy]

Yes. Thank you. But is excess saliva a symptom high on the list I should worry about when it comes to ALS?

 

[LA_boy]

Ok thanks! Sorry I posted my last reply before I seen your's Astugi. Thanks guys

 

[Atsugi]

No. Excess saliva is not a sudden reason to decide you have a terminal disease.

 

[nebrhahe53]

Stop worrying and enjoy life. one in 165 million-I'd take those odds anyday. You realize your more likely to get hit by a meterorite?

 

[Emminka]

When I read this posts, I don't know why I hope I have no als.. I have all (!) symptoms, not some,for four months and I write here first now. Probably I have very small chance my diagnose will be different, but I still hope. And now I see people thing they have als if they have just one or two symptoms, maybe just few days.

 

[ECpara]

You are concerned of excess saliva being a symptom. This happens late in the disease - and to an extreme. Not the little bit you are experiencing (or imagining). When the tongue can no longer move the saliva into position to swallow, it accumulates in the mouth. And then it drools down your chin. And it chokes you to the point you think you're going to die. My husband experiences this every day. He has bulbar onset. I assure you, you don't.