Worried about Bulbar or something.

BFS Online Support Group

Moderators: JohnV, Arron, garym

Worried about Bulbar or something.

Postby Arkansan on October 19th, 2016, 2:13 pm

For months now when I lay down at night I can feel a clicking from time to time in the back of my throat, it almost feels like a bubble of air popping. This worries me that it may be related to failure of muscles back there. I only notice it when laying on my back at night, I don't seem to notice it any other time save for occasionally if my head is tilted or something.

About four days ago after I had finished eating dinner and went to get a drink of water. Something happened, I'm not sure what because I wasn't talking or laughing or anything really, but it seemed like the water went down the wrong way. I began choking, hard. I started coughing really badly, didn't feel like I could breathe, and finally I began vomiting. After I vomited it started to get better. This really scared me because I don't remember ever having done that before.

I also have been going through a phase of feeling like foods are going down my throat slowly and kind of painfully. Not every time but frequently enough. I constantly feel like I have a lump in the back of my throat or a piece of meat stuck back there, I feel like I get a good bit of air trapped back there randomly, and to top if off it constantly feels like I've got mucus in the back of my throat just behind my nose. My throat has also felt dry pretty consistently. I think I sound a bit hoarse but my wife says I sound "sinusey".

I've also had some spells where my chest feels tight, almost an asthma like occurrence, which I do actually have asthma.

I'm worried that this may be the sign of some sort of weakness coming on. I do know that I've had some of this happen around March when I was really in the midst of a bad worry cycle and my twitching was through the roof.
Selfless giver of time
Selfless giver of time
Posts: 206
Joined: August 29th, 2012, 6:25 pm

Re: Worried about Bulbar or something.

Postby Tiredofbfs on October 22nd, 2016, 10:59 pm

I have been going the same for the past week.
It is so sad that after 4 years of symptoms including
Twitching, jelly legs, perceived weakness and muscle
Pain I accepted my bfs diagnosis and got out from this
Dark place. I am getting stronger everyday and happier
That I beat my fear. But now bulbar fear is consuming my life
One day I was drinking water when I felt my swallowing
Reflexes stopped form working and I almost choked
Then I started thinking that it is the dreaded disease
And ever since every time I eat or drink I become hyper aware of
How my swallowing is to the point that I feel that
Food and water is not going down and i might choke any
I went to ent who was not concerned about als
He checked my throats from inside and told me
That my vocal cord muscle are normal and working fine
Only a mild irrritaion was noted at the opening and close
He prescribed me Zantac and sent me on the way

I still feel that I am going to chock soon and I can't get over my fear
But I keep telling myself maybe my mind is playing the trick on me

I wish I could help you and I hope someone else can share their experiences with us
And put our mind at ease. This forum has been dead
I would suggest you to join the bfs recovery forum on Facebook
I just requested to join and awaiting acceptance so I can share my concerns with them
Selfless giver of time
Selfless giver of time
Posts: 122
Joined: February 13th, 2013, 11:28 am

Re: Worried about Bulbar or something.



Return to The Support Group

Who is online

Users browsing this forum: Majestic-12 [Bot] and 10 guests