Bulbar als - time to complete loss of voice

Status
Not open for further replies.

Vivz

Member
Joined
Dec 21, 2020
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
State
UK
City
London
Hi everyone,
I am recently diagnosed with bulbar als. I started noticing changes in my speech mid last year. May I ask how long did it take for you from noticing something is wrong to complete loss of voice? I know everyone is different but still would be interesting to see.
 
Would you mind telling us the details of your diagnosis as you have a long history in the can this be ALS section.
Every PALS is different.
 
I started with a nasal speech last year. Then had an emg a few months back that showed denervation in some muscles. Two months later I had another another emg that showed more extensive involvement.
 
I had my first indication about this time last year and after about 6 months of diagnostics, I was finally diagnosed with Progressive Bulbar Palsey (or bulbar onset) but they had indicated it appears I may have a slower progression. In this year, I have noticed some days are worse than others as far as speech but I have started to set myself up with "banking my voice" and banking some statements in my own voice that can be used in an augmented communication device for when my time comes. I keep thinking that starting Rilutek and a regiment of supplements and vitamins that were recommended has helped slow down my progression. I hope this helps but understand that everyone reacts differently to this terrible disease.
 
Could you please explain who diagnosed you with ALS, bulbar onset? Were you put on Riluzole and offered Radicava? You had a few EMGs that indicated that you did not have ALS; what made the report different this time? Please do explain a bit more about your diagnosis, as this helps the folks in this sub-forum tremendously.

Thanks 😊
 
Maybe you can post the summary at the end of the EMG that showed that you have an EMG consistent with ALS? That would really help us answer you in correct context. thank you
 
I started having hoarseness a year ago, but it was assumed to be related to my chronic sinusitis and periodic infections. In March I started having slurring. By the time I saw a really good neurologist in June, it was obvious and I was diagnosed with bulbar onset ALS. Despite taking Riluzole, my speech has continued to deteriorate. I had a biopsy of leg muscle last month that showed that there is deterioration in my legs as well (though I could tell this already). My speech therapist connected me with Team Gleason and we did voice banking for when I can’t communicate. The voice is synthesized to simulate mine. I have just started using a Triligy machine at night to assist breathing. I have been waiting to get to start the Radicava and hope to do that soon, so I can slow the process down.
 
Status
Not open for further replies.
Back
Top