Botox for Bulbar ALS

[CVG75]

Botox for Bulbar ALS. Has anyone tried it? If so, did it help?
I was diagnosed in February 2024. Only sympyom was my speech and swallowing. I have been offered botox for
speech and swallowing problems which began in June of 2023.

 

[lisa g]

I get Botox injections every 3 months and actually scheduled for my 3rd round next week. I take the injections for excess saliva. It doesn't do anything for speech or swallowing for me. I have found that the affects of the Botox last for 6 weeks. I have had them increase the dosage without having it last any longer. There are 2 different drugs that can be used. This time they are switching to a different drug to see if it works better for me. I also use 2mg of Glycopyrrolate tablets twice a day and 2 drops of Atropine drops under my tongue at bedtime. We all react differently so what works for me might not work for you and vs versa. All I can say is that you'd have to try it for yourself and see if it works for you. They will start out with a low dose and work up to find a dose that works for you.

 

[Denise E]

Hello. I was diagnosed with Bulbar Onset ALS August,2023. I had lost probably 70%of my voice. I did have the injections into the vocal cord area and it brought back a large amount of my sound. People could hear me again.
Denise

 

[lisa g]

Denise, I'm curious do you have a feeding tube or are you still able to eat by mouth? I have gotten Botox injections into my salivary glands for excess saliva and find for awhile my swallowing is worse. It's temporary but think atleast for me getting the injections into my vocal chords would hinder my swallowing more. I am getting my injections today and plan on asking about this.

 

[Paulbx]

I’ve had now three treatments with Botox. They help a lot with the saliva mess. (Which can lead to aspirations of your own spit, if it’s not under control.) Insurance has only allowed once every 3 months. My doctor is pushing to allow it faster. So, we’re going to just do it out of pocket every other time (increasing from once every 3 months to once every 1.5 months). The saliva problem returns after even just 1.5 months for me. I’m getting my 4th round on Monday.

 

[sonia93]

hi , how do you go about looking for the right person to do this for you? My dad was diagnosed with ALS two years ago but lately like two months ago he’s voice is almost gone . I would like to get more info about this please .

 

[lisa g]

Sonia,does your father attend clinic? My neurologist sent me to another neurologist that specializes in giving the Botox injections. I get them for excess saliva. I did enquire about getting them in the vocal chords for speech but in my case it wasn't recommended, they felt it might compromise my swallowing more. I recommend speaking with your fathers neurologist.

 

[Denise E]

Hello,
Lisa, I am not using a feeding tube. I am experiencing more tongue fatigue, however. After the injections into my vocal area, I had a lot of discomfort and difficulty swallowing for about 4 days. It made me very nervous. Then I healed with no more difficulty and my sound improved.