Sooo confused

[Sammantha]

Had the cookie swallowing test and drinking through a straw and chin tuck eating method showed no swallowing abnormalities, but where i have complained for years of food and pills getting stuck, the food in the test was stuck. Doctor said its a motility disorder, right below the part of your throat that cuts your airway off from choking.....Years ago i would get bad choking sensations that i thought where swollen lymph nodes, then found out it was more likely laryngospasm. I still get it every now and then and i HATE it, what kind of disorder could cause this? No wonder my neuro is so confused! Could this be tied in with ALS or pseudobulbar palsy? I cannot find a correlation, I have not had my follow up yet........Thanks, Sam

 

[rose]

Sam,

The area you had the problem in is mixed muscle tissue, both smooth and skeletal. I think that metabolic disorders do affect smooth muscle. I don't think this finding would have any relation to pseudo bulbar palsy, whether or not you have PBP. Let us know what your doctor says after getting your test results. I'm glad you're finally having some of these tests, just wish you were getting (good) answers along with them!

 

[Erica]

No relation to ALS. You need to see a gastroenterologist and have a upper GI motility study done. Take care, Erica

 

[BarryG]

My thoughts are that if you don't have any speech problems (meaning slurring not using the wrong words) then it is likely not bulbar ALS. Generally the tongue muscles are the first affected with the throat muscles and lips coming after so slurring is the normal first symptom not swallowing.

And the fact that you've been experiencing this for years also points away from ALS.

 

[Sammantha]

The ENT took one look at my tongue and throat and thought for sure that was causing the swallowing problems, i do have tongue facics, face twitches and apparantley i cannot say ohhh or some other letters. That is what the speech therapist said who watched the cookie swallow. I was so happy that my upper swallowing was fine because i can imagine how scary it is for others. Your right doc said i needed to have another barium test to figure out why the food is getting stuck and going down slow. I just cant do it i feel i am going to go nuts taking another test....Sometimes I just want to crawl into a cave and fade away. I cant hide my emotions so they affect my work, kids, everything.. At least in the cave i cant let others down, my kids get angry because i am too weak and tired to do anything i use all my energy at work and its not enough there, everywhere i turn i am disappointing people...the thought of more tests overwhelms me, sometimes i wish the doc would say i was crazy just so i could get some kind of help or diagnosis,,sorry if i offend anyone but thats how i feel. sam

 

[Alyoop]

Sam, been there and it's endless and awful. Everywhere I turned more tests then more again. Hang in there, it will end, finally you will come out the other end, and I hope you will gave an answer.
The not knowing is debilitating on it's own, then the fatigue makes it all unbearable. 12 months ago inwas where you are, I was getting depressed, just sick of it all. Now finally I am at peace, not sure of the diagnosis, but copeing so much better, now the tests are over, I have refused my next emg due next month, as I really want to be left alone to smile again.

It will happen I promise. Your family will understand, make sure they know you are tired and need rest. Look after yourself and you will have a bit more energy for the family. That advice came from my psychologist. It was simple but worked.

Take care, will be thinking of you. This forum is for venting, so vent away.
Aly