Old 06-21-2018, 07:55 PM #1 (permalink)
Truss's Avatar
New Member
 
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Truss Truss is offline
New Member
Truss's Avatar
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Default Dysphagia for months

After er visits and ENT specialist twice , possibility of gerd being cause is possible but unlikely. It's literally been 6 months, started as lump and tight throat, now its more of not even being able to feel the food once my food leaves my mouth and feels as though my tongue isn't pushing food back. Almost like I have no sensation in my throat . Minor pooling in valaculae but wasn't visible to ENT of course.

I haven't had any choking episodes with food or water yet but could possibly be because I have no feeling in throat and don't realize I've aspirated.

Perceived weakness in hands and feet, have to double swallow liquids alot , pitch of voice is off a bit and run out of breath while talking long sentences. Idk so many other minor symptoms popping up has me freaking.

This swallowing is insane. Looking for any bulbar people with experience. Have to wait a month for swallow study. This also seemed to be abrupt in onset when it first happened.



.

Last edited by ShiftKicker : 06-21-2018 at 08:12 PM Reason: paras, sentences
Truss is offline  
Old 06-21-2018, 08:11 PM #2 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,719
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,719
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
Default Re: Dysphagia for months

Mod note- past posts here: Looking for insight
ShiftKicker is offline  
Thanks from
Truss (06-21-2018)
Old 06-22-2018, 12:08 AM #3 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,301
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,301
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Dysphagia for months

What does the ENT say relative to the cause of your symptoms? Why were you in ER and what was the outcome?

I understand your fears, but am not clear on their context because of the hyperbole you are using. It is most unlikely you have lost all sensation in your throat, for example.

I don't think you will find bulbar onset PALS here whose experience matches yours, particularly the notion that you have had these symptoms for six months but are seemingly still taking in adequate food and liquid and are not choking --a very good thing.

Best,
Laurie
lgelb is offline  
Thanks from
Truss (06-22-2018)
Old 06-22-2018, 02:36 PM #4 (permalink)
Truss's Avatar
New Member
 
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Truss Truss is offline
New Member
Truss's Avatar
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Default Re: Dysphagia for months

Er was early on when I had the tight throat , lump and feeling breathless. ENT Thinks possibly difficulty initiating swallow. My throat is strange it's like i can't tell if food has been swallowed correctly or if it's sticking in throat, or goes down the wrong tube, also my temperature sensation in my throat is gone. , Hot or cold I have zero feeling of its temp in throat once it leaves my mouth. It's literally been 6 months, hoping I'm not silent aspirating . Stuff will pool in throat a bit, and have to clear and reswallow. Between the swallowing and other symptoms of fasics in certain muscles , calf cramping alot and I noticed my cough isn't as deep as it once was . I do read many bulbar have trouble with thin liquids but if my sensation is compromised I may not know if it's traveling into windpipe. Early on I had ct scans and blood test that showed no abnormal finding s and no other symptoms were present 6 months ago other than swallow.
Truss is offline  
Old 06-22-2018, 03:38 PM #5 (permalink)
Clearwater AL's Avatar
Very Helpful Member
 
Join Date: 2013
City: Central NC
State: NC
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 1,337
Clearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to behold
Clearwater AL Clearwater AL is online now
Very Helpful Member
Clearwater AL's Avatar
Join Date: 2013
City: Central NC
State: NC
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 1,337
Clearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to behold
Default Re: Dysphagia for months

Truss, you may have a problem with sulfates. Some people get a severe choking sensation
when they drink wine which is high in sulfates for example.

Some people have similar symptoms with MSG.

Talk to your doctor about these possible issues.
Clearwater AL is online now  
Thanks from
Truss (06-22-2018)
Old 06-22-2018, 05:58 PM #6 (permalink)
Truss's Avatar
New Member
 
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Truss Truss is offline
New Member
Truss's Avatar
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Default Re: Dysphagia for months

Thanks I will look into anything at this point and will mention it. This dysphagia is consuming me amongst these other symptoms. Barium swallow in a month. The minor pooling and clearing throat and feeling of numbness in throat is so strange. Wouldn't I be aspirating thin liquids by now, idk what to think with perceived weakness , fasics, I know dents aren't atrophy but I have some bilaterally also with cramp in calves. I appreciate all responses and thank u all!
Truss is offline  
Old 06-23-2018, 09:18 PM #7 (permalink)
Truss's Avatar
New Member
 
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Truss Truss is offline
New Member
Truss's Avatar
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Default Re: Dysphagia for months

Any one with bulbar experience I would greatly appreciate your time if possible to discuss symptoms . Thank u for your time!
Truss is offline  
Old 06-23-2018, 09:28 PM #8 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,301
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,301
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Dysphagia for months

Truss,

It is not productive for bulbar onset ALS patients to swap symptoms with you, Truss, and you can understand that they have other concerns right now. You are not an ALS patient. Every "bulbar" symptom you have described is subjective, whereas ALS symptoms are observed by others, and impede normal function to an extent that is unmistakeable.

Al brings up a good point re sulfates -- there are other allergens like shellfish, that can manifest throughout adulthood, and also environmental triggers. Maybe an allergy/asthma specialist could give you more insight if the ENT isn't able to.
lgelb is offline  
Thanks from
Truss (06-23-2018)
Old 06-23-2018, 10:43 PM #9 (permalink)
Truss's Avatar
New Member
 
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Truss Truss is offline
New Member
Truss's Avatar
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Default Re: Dysphagia for months

I will continue my path to the barium swallow and go from there. Appreciate and respect your reply. I will also search the site for older post s of their experiences and research instead of bothering them. This is overwhelm ing with the swallowing difficulty and admire the strength of all on this forum. Thank u for your time.
Truss is offline  
Old 07-10-2018, 06:16 PM #10 (permalink)
Truss's Avatar
New Member
 
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Truss Truss is offline
New Member
Truss's Avatar
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Default Re: Dysphagia for months

Appointment pushed back 3 weeks , so disappointed. Scheduling error., 7 months now with this problem. Still no choking episodes with liquids or solids, thankfully other than pieces sticking in throat and in mouth , also seems I have some trouble managing food in mouth, and possible spill before the swallow and excessive chewing. Figured their would have been more progression . Feels like posterior tongue isn't pushing. Can't feel hot or cold as food is travelling over tongue through throat. I have no sensation , even ice cream doesn't make throat or esophagus cold as it once did.Strange. Haven't lost much weight , minor pooling in throat still, curious after all this time if symptoms would have gotten worse. Wanted to keep thread open until appt and wondering what you think . lgelb I read alot of your posts and the knowledge you have is amazing, seeing all the people you help is outstanding. Hopefully you can read my post and your thoughts on some of these problems. I won't list other symptoms as this oropharyngeal dysphasia is overwhelm ing . Thank you ,
Truss is offline  
Old 07-10-2018, 06:37 PM #11 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,301
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,301
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Dysphagia for months

My thoughts remain the same -- consider allergy testing, drink before/while/after you eat, and rejoice that your symptoms don't fit an ALS pattern (or really anything super-serious that I can think of).

You didn't mention any rx meds that might be new, but if there are any, such side effects are not unknown.

And against the possibility of food allergies, keep a food/symptom diary.

Best,
Laurie
lgelb is offline  
Old 07-12-2018, 12:05 PM #12 (permalink)
Kristina1's Avatar
Member
 
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 446
Kristina1 is a jewel in the roughKristina1 is a jewel in the roughKristina1 is a jewel in the roughKristina1 is a jewel in the rough
Kristina1 Kristina1 is offline
Member
Kristina1's Avatar
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 446
Kristina1 is a jewel in the roughKristina1 is a jewel in the roughKristina1 is a jewel in the roughKristina1 is a jewel in the rough
Default Re: Dysphagia for months

I have bulbar onset and it is nothing like you describe. For me it started with speech changes and choking on thin liquids & particulate food matter, as well as tongue cramps.
Kristina1 is offline  
Thanks from
Truss (07-13-2018)
Old 07-13-2018, 04:21 PM #13 (permalink)
Truss's Avatar
New Member
 
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Truss Truss is offline
New Member
Truss's Avatar
Join Date: 2018
City: Reading
State: Pennsylvania
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Truss is on a distinguished road
Default Re: Dysphagia for months

Thank you for responding. I appreciate it. With my other symptoms this has me worried. It's been 7 months so far not to much progress ion but some with this dysphagia and waiting on a barium study. The pooling of food particles and liquid at back of tongue and clearing throat constantly has me concerned. I haven't had choking episodes yet , I'm assuming that's good but could I still be aspirating is my concern also. Thank u again for your time. Minimal slurring certain letters s, sh , ch . Again my sincere thanks for your time and response Kristina 1.
Truss is offline  
Closed Thread

Tags
back, bulbar, choking, dysphagia, food, lump, onset, swallow, swallowing, symptoms, tongue, voice, weakness


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Dysphagia as first symptom ? dysphagia9 Do I Have ALS? Is This ALS? 10 08-15-2015 04:08 PM
Dysphagia? Arne Do I Have ALS? Is This ALS? 4 12-04-2014 02:56 PM
Dysphagia...so they say NeverPan Do I Have ALS? Is This ALS? 9 08-09-2012 08:13 AM
Dysphagia? suzanne1 Do I Have ALS? Is This ALS? 5 03-23-2010 01:13 PM
Positive for Lyme - infection anywhere from 3 months to 6 months clint31 About Lyme Disease 0 07-19-2008 08:58 AM


All times are GMT -5. The time now is 07:15 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016