Bulbar

[isle667]

I have a question regarding bulbar onset. I do suffer from a hoarse voice usually in the morning but it's been happening more. I do twitch in the face sometimes and Ido have some cramping depending on my facial movments. Like I said before I've been suffering from twitching almost 6 years now.

 

[Katie C]

Can you get a work up from a speech language pathologist?

 

[Nighthawk]

Hi,

I see you had a thread that dates back to 04-03-2009 (exactly 3 years ago) titled: "Bulbar Questions", where you basically asked similar questions to these you're asking today.
On that thread, you were reassured by several forum users that nothing that you were describing there sounded like Bulbar onset (ALS).

It's been 3 years since that thread. If you indeed have had symptoms of Bulbar onset they would have developed into ALS by now or even some years before that.

I, myself started with Bulbar onset ALS and...I can tell you for sure that the way you describe your "symptoms" is not the way Bulbar ALS onset starts.

I am not a Doctor nor a Neurologist but, if you are so worried, why don't you make an appointment with the experts on the field so they can determine for sure what is that you claim you have?


Regards,


NH

 

[ottawa girl]

Nighthawk... Well said,

I read the previous Isle667 posts also, then realized many members who replied to him, passed away.

That's so sad.

 

[Nighthawk]

Thanks so much Ottawa Girl for your kind words.

I think I needed to brought his old thread up so we could stop going in circles over and over trying to answer him the same questions that had already been answered by other forum members 3 years ago that as you said, unfortunately some passed away.

But as you know, there is no cure for stubbornness as quoted by Thomas Paine:

"To argue with a man who has renounced the use and authority of reason, and whose philosophy consists in holding humanity in contempt, is like administering medicine to the dead, or endeavoring to convert an atheist by scripture".

Take care.

 

[Jeff Long]

Nighthawk,
As Sheldon Cooper would say... "ba-zinga!".
As a fellow bulabarian (can we make that word up here?) I can say that I only wish my symptoms were the same as they were 18 months ago, let alone 3 years! So far my 'progression' (I hardly think of it is 'progress!') is slow - thankfully - but certainly not stopped! Hey, wouldn't that be great... "We're perplexed, Jeff, as your 'progression' appears to have ceased. You'd better start paying attention to the expiration date on your milk before you buy it."

 

[Alyoop]

Are you still talking? Are you still swallowing, do you have a PEG tube to keep you alive....if you answer no to any of these questions and you first came here 3 years ago, then I can tell you 100% that what you have is not ALS, PLS, or anything similar.

 

[jellis86]

I have bulbar onset ALS and it started with my speech. It wasn't hoarse nor was it particularly quiet, it was just different, slurred at times, and difficult to finish sentences. As time went/goes on my speech continually gets more effortful for me.
Nowadays it's hard to understand me unless I really slow down to one word at a time...which is NOT easy.

I agree with Nighthawk and others here, your symptoms do NOT sound like the beginnings of Bulbar ALS, or any other form of MND either.