Introducing myself

[ChrissieM]

Hi, I’m ChrissieM and this is my first post. Originally diagnosed in Feb 2020 but unable to accept it sought a second opinion. After a thorough series of tests I was eventually diagnosed again in June 2022. I then had to accept the diagnosis.Bulbar symptoms only so far, have lost the ability to speak and eat. I had a Peg inserted in October. It is brilliant and I have put back 5 kilos. I use an app called Predictable on an iPad and that is great too. My main problem is excess saliva and sometimes thick mucus at back of my throat which wakes me at night. No meds seem to help but I have Botox booked for next week. Does anyone have experience of this? I am desperate for something to help. Also possible reflux. Symptoms seem similar. I take Lansaprazole but it is difficult to dissolve for the tube. Sorry for long post but it is all going round in my head!

[Claireflo]

Hi ChrissieM sorry to hear about your diagnosis and symptoms. My dad was diagnosed with als bulbar onset may 21 and also has no speech or swallow. He also suffers badly with secretions and thick mucus. The consultant has finally agreed to refer him to find out more about botox but the appointment is next month so I'm afraid I can't give any advice (although I would be interested in your experience if you would be happy to share how the treatment goes). I hope it works well for you as I know how difficult it can be from my dad's experience.

[Ellie]

ChrissieM A warm welcome to the forum, Chrissie.

Really hope the Botox works well for you, it takes a while to kick in so don't get too despondent in the days immediately following the injections.

Love Ellie xx

[ChrissieM]

Thank you for all the good wishes. Will let you know how it goes and thank you for the advice Ellie

love ChrissieM xx

[Zante]

ChrissieM Hi, I just wanted to welcome you to the forum, sorry I seemed to miss your original post. I am sorry that you find yourself here, but its a supportive forum with plenty of advice and support and banter.

I too sought a second opinion because I couldnt get my head around it, plus my diagnosis was by letter! I hope you can get some advice on here for your issues with the excess saliva.
best wishes xx

[ChrissieM]

Hi Zante
thanks so much for your kind comments. I probably put my post in the wrong place! So good to be able to talk and share experiences. How dreadful for you to receive your diagnosis by letter. I think some of the consultants need more training in giving such a devastating diagnosis.
i had my botox today and apparently need to wait a couple of weeks for effect to show. Fingers crossed 🤞
best wishes xx

[Derbyram21]

Hi
Welcome to the forum.
You will find lots of useful information on here and great supportive people x

[Zante]

ChrissieM I really hope that the effects of the botox is positive and won't be too long before you begin to notice an improvement.

You definitely posted in the right place! I just missed it. I hope you are managing to navigate the forum and can find it helpful and supportive.

my original consultant who diagnosed me was a professor. Apparently he is really highly respected within the field... but bedside manner was non existent and so I asked to change consultants to the neuromuscular mnd lead consultant at my local hospital who was brilliant and totally different! I hope you have a decent team. Xx

[Ellie]

ChrissieM Please let us know how you're getting on when the Botox kicks in. xx

P.S. Don't forget to keep your fluid intake up.

[Claireflo]

ChrissieM I'm keeping my fingers crossed that the botox works well for you x

[KimB]

My neuro gives Botox injections for excess saliva. It worked well for my friend who has bulbar onset.

I'm not sure what drugs are available to you but here is a list of some of the drugs they use for excess saliva.

https://www.als.org/navigating-als/r...cessive-saliva

[ChrissieM]

Thanks Kim, I have tried some of these but if Botox doesn’t work will have another try.

[ChrissieM]

Thanks for all your good wishes will let you know how it goes. The doctor took the utmost care using ultrasound but a low dose. Fingers crossed xx

[Ellie]

The doctor took the utmost care using ultrasound but a low dose.

Did they doctor explain why you weren't given the normal dose? Did you get 4 injections? xx

[ChrissieM]

Hi Ellie, they injected a low dose into the submandibular glands only. He said he wanted to gauge the effect before giving me more. Sounded sensible. One week on constant thin mucus is def less but sticky and mucus in throat seems increased. Am drinking 2 litres of water per day through the peg and waiting to see how it is after 2 weeks. Doctor said he would arrange a call at 6 weeks. So just see how it goes I guess! Xxx