Fear beginning of bulbar

I posted over a month ago that my tongue felt strange--burning and thick. I had also had a period when my swallowing felt strange. Had swallow test done which showed esophogeal dysmotility. The swallowing sensation seemed to go away for a few weeks but has now been back for several weeks.

The best way to describe my swallowing problems is that my throat just doesn't seems to be working all the way. It feels like it working half-heartedly. Specifically, if I try to isolate the sensation, it in the upper part of my back throat. I have no problems eating or drinking, although I'd say when eating I feel like I have to swallow a few more times than I used to.

My doctor started with thinking reflux but admits he's now confused since 6 weeks on Protonix did nothing. He said I could see a gastro, ENT or neuro but that he'd start with neuro.

I have no speech issues.

Does this sound like the beginnings of bulbar? Any suggestions for which doc. I should start with? Worry is consuming me--it's hard to not think about when I swallow so many times a day and feel the problem every time. Thanks for any help.

Sorry, I mistyped. My GP, suggested I start with gastro, not neuro.

mcmom,

No, this does not sound like the beginning of bulbar, and esophageal dysmotility would indicate a different muscle type than is involved with ALS. (smooth versus skeletal) I definitely would go to a gastro doctor. Have you been tested for diabetes? a hiatial hernia? gerd?

Good luck to you, I hope you get some answers and help with the problem.

mcmom, I agree with Rose. It doesn't sound at all like my experience with bulbar ALS. I hope that your doctors can figure it out.

Barry

Ditto here ... doesn't sound to me at all like bulbar onset.

ALS starts with an unexpected weakness, not with strange sensations. You are unable to do something you normally do ... but you don't "feel" or see something strange in your body, you don't even feel weak.

Usually in bulbar, it starts with slurred speech, resulting from a weakened tongue and lips. If you have no trouble speaking or swallowing ... even if your tongue feels funny or different in some way ... that points AWAY from ALS. It's the opposite of how ALS presents.

Sounds like your doctor is on the right track sending you to a gastro person. I'd trust him/her to get to the bottom of it.

Take care.

You know, my mother's symptom first appeared to be footdrop. Actually, now that we know that she did not have COPD or Emphysema, it would appear that her first symptom was in her breathing. In 2006, she started saying that holding my daughter on her lap smothered her. We could hear her odd breathing sounds through the walls. She didn't realize she was making odd noises. The only way to describe it is the random grunts and groans the many ALS patients make. Like I said, we thought she had COPD. After her initial diagnosis, the ALS clinic did their thing.....various doctors saw her in one visit. The respiratory people assessed her breathing. We made it a point to ask about COPD, etc. They told us she had no sign of COPD. That was when it was decided her symptoms began in 2006. She actually fell into the catagory of Bulbar Palsy life expectancy. The Merick Medical Book list life expectancy for Bulbar ALS as 1 to 3 years on average. It appears that my mother lived 3 years after the "first" symptoms started. I hope that you do not have bulbar ALS. I will also add that if you are having burning feelings and or numbness, those are sensory issues that are not related to ALS. (Or, so the neurologist said)

Thank you for your replies. The past two days were good, with normal swallowing, but it seems to have returned today. I guess I should add that sometimes, my jaw feels weak or strained, but at this point, I wouldn't be surprised if that is from stress.