Bulbar onset

[Alexandre]

Hi,

Is it likely to start with bulbar onset after 15 months of widespread twitching?
I’ve been to a neuro (emg in the first month of twitching) and been to the neuro again 2 weeks ago (no emg – only clinical). Twitching would be benign.

I have a hoarse voice and a soar throat for the last 2 weeks. Very odd feeling deep in my throat. Could this be bulbar onset?

Alexandre

 

[Blizna]

Alexandre, I did not reply to your PM since the more you discuss it, the more you are scared.

The odd feeling in the throat etc. is the sign of anxiety you are experiencigh. Been there, believe me! 2 years ago I though I even cannot swallow properly. I have never heard of anyone who had widespread twitching for 1-2 years and then start with bulbar als. For bulbar ALS, the most specific sign even in the beginning (according to ALS specialists) is tongue fasciculations - which is not strong twitching, but constant shivering described as the often used "bag of worms".

I am twitching 2,5 years...almost never in calves, which is typical for BFS. I twitch in arms, shoulders and forearms mostly...pretty badly aftert stretching the muscle which was previously resting for a long time.

 

[Alexandre]

I know i'm scared but who isn't
I never had those kind of feelings before in my throat that's why I'm asking this. I don't think this is anxiety related because I'm quit calm.
I also have a lump - click feeling in my throat when I swallow.

 

[Blizna]

To me you sound anxious and nervous, which is understandable. You do not have to feel anxiety, underlying anxiety is pretty common and with the fear of ALS I would bet its your case.

All your troubles with throat I had too. Read some anxiety symptoms.

 

[Danijela]

How about an EMG of bulbar region (tongue, mouth), to rule the bulbar onset out? I somehow feel that nothing else will help calm your fears. Personally, if I was that concerned I would pay and go privately (unless your consultant is willing to do it) and get it sorted once and for all, rather than worry about it. Dani

 

[Alexandre]

But will that calm down my fears. My neuro told me last week he thinks it's bfs, a day later my throat is weird so I start thinking again.
Everytime when I convinced myself it's bfs somethnig new shows up

 

[Danijela]

If that does not calm your fears, then you need to admit that your problem is not physical but psychological, and you need to seek appropriate help to deal with your fear and anxiety. I don't think this forum is the right place , as nobody here is neither qualified neurologist (to diagnose your symptoms) nor qualified psychologyst/pshychotherapist (to help you deal with your fears) and reading the posts of people who are seriously ill and discussing often life treatening symptoms will not necessarily help you.

I am sure there are other places, like self help groups that may be of assistance to you.

 

[MangiPNG]

do a wikipedia search on "Globus pharyngis" and see if that fits you lump in your throat description. I too have had widespread twitching and the lump in the throat feeling since Dec 08 and June 09, respectively. Get an EMG and continue to monitor things with your doctor. You won't find a diagnosis on this forum.

Good luck!