Bulbar info needed

[Allen222]

Hi all: I'm hoping for some input regarding bulbar as I feel that I have early symtpoms of it related to swallowing. Most notably I constantly am having swallowing issues. For instances, when I drink I end up having to spit out Phglem quickly afterwards. Furthermore, when I drink or eat, I feel like the food goes into my nose sometimes. Each morning, I also wake up with tons of salivia in my mouth. I also have been biting my tongue and my ear has been popping frequently. In addition, I have begun to feel cramps in my right arm and been having balance issues. I went to both a dr and a neuro who attribute this to gerd and anxiety. Does any of this sound like bulba? The stickies don't give much info on the swallowing problems and I want to see if I should push harder with my doctors. Thanks!

 

[Allen222]

I should also add that I often find myself having to clear my throat after drinking, which I read from some people on here was the initial sign of bulbar. Thanks again!

 

[affected]

Hi Allen

Are they treating the gerd?

That can certainly cause the symptoms you are describing.

If something is going on with your ears that could affect balance.

You don't say how long this has all been happening? If it hasn't been very long it would be unusual to have symptoms affecting bulbar, arm and legs all at once ALS doesn't start that way.

 

[Allen222]

The leg issues have been about a month, the salivia problems about 2 weeks. I'm on Prilosec at night for gerd and a high dose of klonapin for anxiety.

 

[Allen222]

My reflexes are also fine, just concerned about the salivia and bulbar.

 

[Allen222]

Also, thank you for replying Tilly, you seem to have a good knowledge of bulbar from the posts I've read. Do my salivia and swallowing symtpoms seem similar to what is seen with bulbar? Thanks again!

 

[Allen222]

I did go to the neuro last week, should I see someone else about my bulbar concerns? Thanks again!

 

[affected]

So far your widely distributed symptoms don't shout ALS to me at all.

Maybe ask for a modified barium swallow test as then they can really see what is happening when you swallow.

Then you need to calm yourself somehow and work with your doctors, they are not perfect but they are pretty smart. All the best.

 

[Allen222]

Thanks! That's good input, much appreciated

 

[TheBean]

Hi, i dont usually reply because i feel i am not in a good emotional place....BUT...don't let one or two docs tell you its 'likely' something else if your gut instinct tells you its not GERD. you might go through ten docs til you find one that orders the fourteen tubes of blood including comprehensive lyme, the mri of your brain, orders the emg/???, send all of your records and you to an als clinic director for second opinion whether its rule out or rule in. its nothing to mess with...i walked around for three years...each year everything became a little more ALS weighted. by the time year three rolled around, my hands were cramping and weak, but it was mainly my speech, saliva/drooling and couldn't eat like i used to....my family and hubbys family thought i was drunk all the time or taking drugs because my speech. i went in 5/8/14 and he crammed all the tests together and was diagnosed the day before my kids graduated from school. this is my point...get it done. if you can't push like a mama bear til you are satisfied. i pray you don't have this horrible disease...but if you do, you don't want to waste a minute in denial. i was given life expectancy of 3-5 yrs...having already known for almost three years, my options are not good at this point. PUSH. And PUSH (politely) until you are done.

 

[TheBean]

he should have addressed your bulbar concerns!

 

[TheBean]

may i ask your high dose of klonopin. That can cause issues with your body acting strange in high doses...and it has a long half life so it builds...

 

[Allen222]

I'm on 1 mg of it every night. I appreciate your reply. I do think my salivia issues, especially now that I wake up with the chills are pointing towards als. My bms have also become more frequent which I know is another sign of bulbar. I appreciate the advice and recognize I should push hard for the emg.

 

[codyclan]

No, these are not signs of bulbar. Really. You have something going on but it is. It ALS. The problem with pushing for an EMG is that you are limiting g the focus of the docs. Go back, indicate that you feel it is more involved than GERD and let the docs diagnose you. You don't know what else could be causing your problems but the docs can find out. I know bulbar well and your symptoms do not point to ALS.

 

[Allen222]

Thank you, that is good advice. I will follow up with the Drs but will try to avoid just focusing on als.