Old 12-24-2018, 02:11 PM #1
spacecowboy000's Avatar
spacecowboy000 spacecowboy000 is offline
New Member (Say Hi)
 
Join Date: 2018
City: Houston
State: Texas
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 7
spacecowboy000 is on a distinguished road
spacecowboy000 spacecowboy000 is offline
New Member (Say Hi)
spacecowboy000's Avatar
Join Date: 2018
City: Houston
State: Texas
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 7
spacecowboy000 is on a distinguished road
Default Update - 12/24/18 - Extreme bulbar worries

Hello everyone...I hope everyone is having a good Christmas season. I wish I could say the same.

It's been almost 6 months since I have been here. Some things have gotten better and some a lot worse/terrifying. I was hoping to never have to come back here but my situation has dictated I do.

Over the last four to five weeks I have been having what I thought were sinus issues. Having mucus in my nose as I ate and drank. Post nasal drip and a reddening throat. I thought nothing of it. The last 2 or 3 weeks I have been starting to feel like there is pressure behind my nose whenever I eat or drink. Like something wants to go up my nose. I feel occasional burning. I have had pain behind my eyes and in my ears but I still was attributing to sinus.

I went to go see my ENT a week ago and as I describe the symptoms the first thing he said was soft palate weakness/nasal pharynx reflux. Told me to go back to my neurologist. I told my ENT I had just had a follow up with my neuro a few days before and I was given the all clear. Though at that visit all my neuro did was have me stick my tongue out and watch it at rest. My ENT then ignored all the other symptoms I said and told me to go back to her/give her a call. I asked the ENT to scope me and he refused. I called my neurologist back and she told me she has never seen any clinical evidence of soft palate weakness and asked what the ENT said when he looked....The ENT said it looked fine but that you can't always tell by looking. My neurologist told me that the ENT was throwing out a red herring and not to worry that I still don't have ALS. I also went to an urgent care doc and they also said my palate looks strong.

Though over the last few days I have noticed once or twice what I think are drops of liquid i have drank come out of my nose. Which would indicate palate weakness. I even felt one nostril pop open and I thought i felt something go through. Each of those incidents I put it into tissue and it looked like what I had ate/drank. My gf and family dispute that though cause it doesn't happen when I try to do it in front of them. They have had me drink against gravity and put tissue in my nose. I have done so many times without choking and without evidence of leaking into the nose. So they don't believe it. Reminding me ALS doesn't come and go.

Also over the last 2 to 3 weeks swallowing has becoming more difficult. I get fatigued while eating and drinking. Sometimes taking a long time to finish my food or beverage. Then when I do I feel drained and tired. Some days have been better than others. This past friday I had difficulty initiating a swallow and had to take 2 swallows at a time just to eat mashed potatoes. As I type this I just finished lunch. A double meat burger which took me 22 mins to eat and I had to pause 3 times eating cause I got tired/muscles sore at the bottom of my throat. I didn't have the difficulty I had friday but I still feel/worry its progressing.

My tongue has been also getting more fatigued and sore lately. The twitches I have on my tongue come and go. I can also feel them as it feels like a pulling or like my tongue is full of electricity. I can still move it but it takes more effort and doesn't not feel nearly as fast/strong as it used to.

I have not choked on liquid constantly and my speech is not slurred/hypernasal, I know these are the original/main bulbar onset symptoms but i don't know who/what to believe. The neuro who is my second ive seen this year to tell me I don't have ALS or the ENT who told me I have palate weakness without any real evidence minus my symptoms/what I told him? Does any of this warrant my anxiety or am I freaking out over nothing?

I am scared cause my gf and I are talking about marriage.......I don't want to burden her with this if I do have it. I hope to hear from you guys soon.
spacecowboy000 is offline  
Old 12-24-2018, 02:43 PM #2
Bestfriendstilltheend's Avatar
Bestfriendstilltheend Bestfriendstilltheend is offline
Senior Member
 
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 570
Bestfriendstilltheend is just really niceBestfriendstilltheend is just really niceBestfriendstilltheend is just really niceBestfriendstilltheend is just really nice
Bestfriendstilltheend Bestfriendstilltheend is offline
Senior Member

Bestfriendstilltheend's Avatar
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 570
Bestfriendstilltheend is just really niceBestfriendstilltheend is just really niceBestfriendstilltheend is just really niceBestfriendstilltheend is just really nice
Default Re: Update - 12/24/18 - Extreme bulbar worries

Hi there,

You may have extreme bulbar worries, but zero bulbar symptoms, especially since you've been cleared from a neuro and your symptoms do not align at all. You've explained symptoms that come and go, and that is not ALS. With ALS, once something goes, you don't get it back. I have absolutely no idea how you came to fear ALS because the symptoms do not match up in the slightest.

Good luck to you and please continue to work with your docs.

Merry Christmas
Bestfriendstilltheend is offline  
Thanks from
spacecowboy000 (12-24-2018)
Old 12-24-2018, 04:11 PM #3
lgelb's Avatar
♥ lgelb lgelb is offline
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: 7,088
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: 7,088
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: Update - 12/24/18 - Extreme bulbar worries

Try a room humidifier, more liquids, more sleep and less stress. Even five minutes of deep breathing can help.

An OTC nasal steroid like triamcinolone is worth a try, to reduce any nasal/sinus congestion as is common in winter. But we all regurgitate a bit of food from time to time and you can make it come out of your nose sometimes esp. if you are dry/clogged -- that doesn't mean that anything is wrong w/ your palate muscles.

Just because the ENT wanted to "assign" your symptoms doesn't mean that anything beyond normal niggles is wrong. That would be like someone saying "You have a nerve problem" because you had a headache.

So we won't see any ALS here, but definitely worthwhile to get a handle on your fears before you and your gf commit. Try to figure out what/who would reassure you there in H'town and make it happen. If you say "Nothing/No one -- I am convinced I have bulbar symptoms of ALS," then it's time for counseling.

Best,
Laurie
lgelb is offline  
Thanks from
spacecowboy000 (12-24-2018)
Old 12-25-2018, 01:24 AM #4
Vincent's Avatar
Vincent Vincent is offline
Senior Member
 
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 880
Vincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to behold
Vincent Vincent is offline
Senior Member
Vincent's Avatar
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 880
Vincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to behold
Default Re: Update - 12/24/18 - Extreme bulbar worries

While post nasal drip is an issue for people with ALS, it is not a symptom of ALS. It is just something that makes life suck even more. ALS symptoms NEVER come and go they just keep coming. You have it from a neurologist you have nothing neurological going on. Pour yourself a BIG drink and celebrate the fact you will have a long life ahead of you. Don't mess it up worrying about something you don't have. Merry Christmas!
Vincent
Vincent is offline  
Closed Thread

Tags
als, back, bulbar, bulbar onset, burning, choking, christmas, clinical, early, eyes, family, food, hope, neurologist, onset, pain, pressure, scared, speech, swallowing, symptoms, tongue, twitches, update, urgent, 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

Similar Threads
Thread Thread Starter Forum Replies Last Post
New here and looking for advice - bulbar worries and other symptoms Thankyou Do I Have ALS? Is This ALS? 10 10-15-2015 12:59 AM
31 year old, could this be bulbar- update #4 CB1977 Do I Have ALS? Is This ALS? 11 10-16-2008 11:51 AM
31 years old, could this be bulbar- UPDATE CB1977 Do I Have ALS? Is This ALS? 4 10-08-2008 05:17 PM
31 yr old, could this be bulbar?- update CB1977 Do I Have ALS? Is This ALS? 12 09-11-2008 02:59 PM
bulbar symptoms update janicebuf General Discussion About ALS/MND 4 08-30-2005 09:02 AM


All times are GMT -5. The time now is 02:56 AM.

 

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