Dysphagia?

[suzanne1]

I just go super scared. My background - have been twitching bodywide for 9 years. Seen m any neuros and was absolutely OK with a diagnosis of BFS. Then last November, my tip of my tongue began to twitch intermittently. I saw 2 neruos who said I was fine - normal clinical exams so normal they did not want to do an EMG. I worried about Bulbar ALS, and still do...but was getting better with it honestly.

i have no speech issues, no swallowing issues...no weakness anywhere. and totally normal clinical neuro exams - the last one 2 weeks ago.

then tonight, I was eating ice cream with my daughters, and about 3 min after eating ice cream, I blew my nose and some ice cream cam out in my nose blowing into the tissue. that has never happened - I looked it up and it says it is common in neuromuscular issues, called dysphagia ...

I am now crazy terrifies...any thoughts. was this an ealry symptom for any Bulbar onset people out there? thank you

 

[BarryG]

No, No, No and no and if you can say that fast then it ain't ALS.

 

[rose]

Suzanne,

That would be soft palate related ~ not connected at all to your tongue or twitching. I would just write it off to a freak occurrence, like getting water up your nose when you swim or the likes. Don't give it a second thought. If you needed to blow your nose, maybe some melted icecream decided to hitch a ride on what you were trying to get rid of. The soft palate is open while we breathe. Its really OK

 

[suzanne1]

Thank you so much for the comments. Appreciate it a great deal.

I got so freaked out because after it happened, I of course looked it up. What I read on the med sites, was talk of "nasal regurgitation" - a symptom of soft palate weakness which occurs in Bulbar ALS. So now I am worried all over again!

I do not have hypernasal speech (speech with air coming out of my nose), which I think would accompany an inability to close the soft palate properly when I swallow.

This just has never happened before to me, and I was really feeling good about realizing twitching does not equal a motor neuron disease. But when I read about nasal regurgitation, which sits in the "dysphagia" category - that is a symptom of ALS.

I have been twitching bodywide for so long, but the twitch on the front of the tongue is new, starting 4 months ago. And now this episode with the food going into my nose has me terrified.

 

[trfogey]

Now you know why we tell people to leave the diagnosis to the doctors and stop reading medical sites on the Internet. Read support groups for the specific diagnosis that you have and ask your questions there. Drs. Giggle, Bing, Jeeves, and Yahoo should really be listed with the Better Business Bureau for lousy bedside manner, failure to provide accurate information in its proper context, and just generally scaring people to death.

You are not going to want to hear this, but you really need to stop looking for medical information on the Internet, either about your own condition or that of anyone around you. Your impatience for answers, combined with your fixation on ALS, are making it impossible for you to evaluate the information you get in any kind of objective way.

BFS and ALS are on completely opposite ends of the neurological spectrum. A diagnosis of one is a complete rejection of the possibility of having the other. ALS fasciculations are not benign. Benign fasciculations are not caused by lower motor neuron death and renervation.

When your doctor diagnosed you with BFS, he rejected the possibility that you have ALS as a cause for your fasciculations -- completely, utterly and totally rejected. Why can't you do the same?

Good luck to you.

 

[rose]

Suzanne,

It made me so sad to read your response. I think even more discouraging, is that I read your other post just now, where you promised you would believe this neuro you're scheduled to see tomorrow. Even though you have good intentions of doing just that, will you? Life is too short to let unfounded fears encroach on your life. No one is promised tomorrow, so to let this rob you of the good times is SO wrong.

Ice cream is made of milk. Milk sticks to mucous secretions, that's why when we have a cold its good not to have milk products. Blowing your nose (which is open to your mouth, and hence the soft palate) and finding the residual of icecream, is NOT the same as dysphagia.

You know what else? You're not the one who can determine if you have air leaking out your nose from poor soft palate closure, nor could you know if your voice sounds nasal. Back when I first started having problems with my voice (being weak) my ENT sent me to a speech therapist for evaluation. This lady, the ST, told me I had air escaping from my nose, and my voice, in addition to being breathy, had a nasal quality, and I was SO offended. I'd always had a pleasant sounding voice, and I didn't believe her, it hurt my feelings (about how I sounded) She then used some gadget to prove to me that air WAS sneaking out my nose when I talked, so even though it convinced me, I would never ever have known it on my own. (and I still don't think I sound nasally LOL)

If you had true nasal regurgitation, most times when you took a drink, you'd have it going up your nose.

By all means, keep your appointment tomorrow, but, in the bigger picture, you might want to consider having someone to talk to, to help you with the fears your BFS have brought you.

The very best of luck to you.