Bulbar Symptoms?

[vic808]

Hello members of the community, thank you for reading this. I have been viewing the forums and various threads when I discovered this place a couple of months ago.
Lately I've been worrying about my swallowing. I have noticed that when I eat some foods, like meat, I have to sort of make an effort to swallow. When I swallow liquids or food, I usually have to burp or either my throat will make a "crackling" sound after I swallow. I will usually test my swallowing and sometimes it'll seem like I've forgotten how to swallow and the food/liquid will stay in my mouth before I can even swallow. I choke on my food once in a while. Also my throat or the throat muscles have been sore/hurting. I've also been told that I mumble a lot. Is mumbling a symptom of Bulbar? My upper lip has also been twitching a lot recently, and I also get a bunch of body twitches. Sometimes my mouth produces too much saliva but that might be stressed related since it only triggers when I start worrying about if I have ALS or something else. I have always been terrified about ALS since I was young when I read about Lou Gehrig. I appreciate anybody who responds to this and will take any advice given to me.

PS: I am a male, 19 years old

 

[affected]

Vic honey, you should not be here.

Go to your doctor, you can have a swallow study done which will allow medical professionals to help you work out what is going on.

Bulbar does not start this way, and only a doctor can help work out what is going on.

 

[cheerleader]

Don't know if this will be helpful but- My husband, too started out with swallowing difficulties. We spent almost 2 years trying to get different ear, nose, throat specialists to diagnose him. Finally the specialist at Johns Hopkins hospital recommended a neurologist ! Then he was diagnosed right away. So if your ear, nose,throat people can't diagnose, suggest you follow up with a neurologist! There are SO many things this could be and you can't jump to conclusions that this is ALS. Good luck!

 

[affected]

My husband was bulbar onset too, but the OP does not describe the kind of swallowing or speech issues that signify bulbar onset. He also had emotional lability and wasting in his hands and arms within a short time.

Cheerleader we also went through many months of ENT, Facio-maxiliary specialist and dentists. He even had surgery to remove bits of bone from his jaw!

The best thing is to get a barium swallow done, that will pin it and get referrals to the right kind of specialist. Bulbar normally starts with slurred speech, not mumbling, and choking or spraying out when swallowing liquids, not food. That's why I said this description is nothing like bulbar onset. I don't like usually describing it much as it often just makes DIHALS folk keep trying to add symptoms ...

 

[cheerleader]

Tillie, wouldn't it be so much easier if all symptoms followed the same pattern! My hubby's bulbar was swallowing solids at first, and no initial speech difficulties but the wasting in the arms soon followed. And you are right about people jumping on the DIHALS bandwagon with too many symptoms. What I still find amazing is that none of the ENT people suggested neurology until Johns Hopkins! Everyone is so focused on their own specialty.... Guess my point was keep searching for answers! We all have to be our own best medical advocates (without letting our imaginations run away!).
You are so knowledgable,suspect your experiences were more typical than my husband's. Always learn from your posts ( and your innate compassion!) So glad you are continuing to contribute, despite your sad loss.

 

[affected]

thanks cheerleader and I know what you mean!

When I cancelled further endoscopy tests with our ENT once we got diagnosed he was lucky it was by phone because I would have totally slapped him when he said - yes I thought this was going to be what it was .... like um, then why hadn't you referred us to a neuro eh?

I do stand corrected - yours is the first time I've heard of it starting with swallowing solids. It is the worst thing about this disease - the only thing consistent is the inconsistency!