Question about Bulbar

[leadtheway]

i guess what i'm not sure is, can the spine issue cause the throat issues etc. Yeah the burning sensation isn't all the time, just random, I've already tried steroid injections in Cspine and lumbar to no affect. Couple weeks I'll go back to neurosurgeon and see what he says..I was really hoping ENT would find something.

 

[KarenNWendyn]

You say your spine xrays have shown “spinal stenosis, osseous ridging, bilateral foraminal stenois on a few levels, also cord impingement in a couple spots as well as straightening of c-spine”.

To answer your question about a possible connection between spine issues and throat/ swallowing issue—

Yes. People with severe hyperostosis, which refers to excessive extra bone growth along the vertebrae, can have a situation where the excessive bone forms spurs that can impinge on the esophagus as well as on nerve roots. This can interfere with normal swallowing. It shouldn’t cause a burning sensation in the throat, but reflux and use of nonsteroidal anti inflammatory drugs can cause burning.

The neurosurgeon is the person to see.

You might investigate a condition called DISH (diffuse idiopathic skeletal hyperostosis) which pertains to people with excessive large bone spurs. This has been described in association with dysphagia (difficulty swallowing).

Another one is ankylosing spondylitis which refers to fusion of the spine. It can cause stenosis and straightening of the spine. Usually DISH and AS can be distinguished by clinical and X-ray features.

But ALS is off the table for you.

Good luck!

 

[leadtheway]

yeah there isn't any burning, just a discomfort when swallowing and feeling like something is in my throat. Makes me cough alot. Thanks for the info Karen

 

[affected]

NOT ALS - you won't feel any different as we keep telling you. You will however fail to speak and swallow. ALS is about failing, not feeling.

You have something going on - but you need to work with doctors who can examine you and discuss it with you in person. This is not how ALS presents (my husband died from bulbar onset ALS)

 

[lgelb]

Experimentally, even without a formal GERD label, some people are sensitive to certain foods in middle age. You could back off on quantities of acidic foods like OJ, tomato-based sauces, heavily processed foods/cured meats. Or start a food/symptom diary.

 

[leadtheway]

Thanks all who responded, I'll def. come back and update once I have a definitive DX to maybe help others

 

[Momofone]

Both my mom and uncle had bulbar onset. And with both of them, their speech was the first to be affected. Your symptoms don’t sound like ALS.

 

[leadtheway]

was it subtle at first like fumbling words or was it full on slurring? Did they feel anything different with tongue?

 

[KarenNWendyn]

We’ve told you you are clear of ALS, so to keep asking additional questions is not helpful.

I’ll just reiterate what’s in the sticky, that ALS is about failing, not feeling. I have difficulty speaking and swallowing and my tongue and throat feel perfectly normal.

So please, no more questions, but do update us when you have a definitive diagnosis.

 

[Momofone]

was it subtle at first like fumbling words or was it full on slurring? Did they feel anything different with tongue?

It was full on slurring. I thought she was drunk or something, though she never slurred when drinking in the past. It would frustrate her completely.

Read the sticky note post in the forum. It helps me greatly when my mind dives into anxiety over my 1 in 2 odds of inheriting FALS. I’ll tell you this - the mind is POWERFUL and it can create all sorts of symptoms when you start worrying about/fearing ALS. Anxiety a horrible, and I suspect it’s what you’re going through. I’ve been there. You won’t be finding answers on the internet. Get back to your doctors for further testing if you don’t like what they’re telling you, but I don’t think it’s ALS, personally.