Bulbar

Post your questions about BFS here

Moderators: JohnV, Arron, garym

Bulbar

Postby Pinguino on September 3rd, 2014, 4:44 am

Good Morning,

I really need some anwers. :(

since a couple of weeks my als fear now is foccusing on bulbar. I have really strange symptoms in my mouth what scares me.

This are the symtoms I have:

- Difficult with talking. i have the feeling that i have slurred speech, some words are diffucult to say.
- Dry lips
- a lot of saliva. I am swallowing it every time.
- painful gums
- very painful tongue, feels burning or strange spots on my tongue. Cannot really explain it but this sensation is very annoying. Lookt a bit like I have burned my tongue
- phlegm in throat

The strange feeling in have at my tongue scares me the most. I am really wondering how I can check if this is not bulbar als.

Does anyone knows if you "feel" something in your mouth with bulbar?

Those symptoms driving me nuts. The other symptoms I had before in my limbs are almost gone now but the mouth/tongue thing is even more scary.

(I went to neuro couple of weeks ago and the MRI of my brains and EMG of my right hand were fine... )

I am a 33 year old Male..
Pinguino
Interested
Interested
 
Posts: 18
Joined: July 16th, 2014, 3:00 am

Re: Bulbar

Postby Yuliasir on September 3rd, 2014, 4:56 am

Hi,

1. Do you have difficulties like you speak in too weak vocie and can not increase the volume as much as you wish?
Is your voice flat, toneless, and you can not deliverately change from wishper to loud voice etc.?
2. Do other people ask you to repeat your words as they can not understand what you are trying to say?
3. Have you been in the situation when you JUST CAN NOT speak any more, becasue you do not feel your tongue at all as a part of the body? I.e., did you ever failed to speak?

if your answer is not, it is not a bulbar paralysis or paresis but just perceived symptomes common for anxiety syndrome.
dry lips and salivs issues are symptoms of anxiety syndrome.
'burnt' tongue and a lot of phlegm in the throat are symptomes of GERD (I had the same and just a few days ego my gastroenterologist confirmed that this is GERD), which is aslo typical anxiety syndrom part.

hope this would help a bit

my best regards
Yulia
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Bulbar

Postby Pinguino on September 3rd, 2014, 5:25 am

Hi Yuliasir

Thank you for your quick reply.

Somethimes my voice sounds weak but not all the time. I can still scream and sing loudly but my tongue is painful after i while.

Other people do not notice anything i guess, they just don't tell me. I have ask people if my voice is changed. They did not notice this.

I never failed to speak and I feel my tongue all the time. It is anoying. Painful and the feeling that my tongue is very big and pain on both sides.

Do you have pain in your tongue with bulbar als?

I don't know wat Gerd is?

Yuliasir,
I've read that you also suffer from GAD. Have you benefited from medication? I am affraid to use them.
Pinguino
Interested
Interested
 
Posts: 18
Joined: July 16th, 2014, 3:00 am

Re: Bulbar

Postby Yuliasir on September 3rd, 2014, 6:07 am

I do not have ALS so can not tell you if ALS people have pain in the tongue :) as far as I can understand by reading ALS stories, no pain is in the symptomes.

GERD goes for GastroEsophageal Reflux Disease - due to the fact that our GIT is under autonomous system rule, and BFS is in a big part a disease of autonomous nerivous system, we almost always suffer from GERD which is a back movement of acidic masses from the stomach to the esophagus, causing burning pain in the chest, severe esophageal spasms (very very painful when swallowing), throat spasms, persistent wet cough/feeling of phlegm, sore throat, burning in the throat and at the tongue, etc. Some of us have it so bad thet they have so called Barret esophagus (constant acidic burns in the esophagus, need prompt medication/operative treatment).

burning sensation in the throat and tongue could be aslo a paresthesia, deviation of sensory effect, also pointing out from ALS.

As for medication: I was using gabapentine as mild seadtive, rexetine (SSRI, under control of psychiatrist, at lowest possible dosage) and some of valproates after that also under psychiatrist control (weekly contact and reporting my conditions). That had helped alot. I also was on psychotherpay with Geshtalt approach specialist and found it extremely helpful for me.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Bulbar

Sponsor

Sponsor
 


Return to Questions About BFS

Who is online

Users browsing this forum: No registered users and 9 guests