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    #16
    Hairbsb - Very interested to read your post and to see the responses, as I have similar bulbar issues as you.
    In recent weeks I am experencing excessive saliva, drooling, and feeling of 'thick' fluid in throat which doesn't move easily but makes swallowing awkward.
    I've been on carbosisteine for many weeks without noticing improvement, and am also on glycopyrronium bromide which isn't working too. (I am also sipping pineapple juice.) A problem related to the glyco is that my mouth becomes very dry when I'm asleep.

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      #17
      Michael Nicholas Snap. I'm as dry as a bone of a night and I have to peel my lips away from my gums !!! Could I ask what your first symptoms were and when you were diagnosed. I can private message if you like. Struggling right now and i am trying to keep positive you know but it really gets me down.

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        #18
        Hairbsb

        Welcome back to the forum. It seems like you are having a long drawn out path to diagnosis and I feel for you. Everyone presents differently but my first signs were slurred and nasal speech. The drooling came months after diagnosis and is controlled by glycopyrronium bromide. Try not to take the second one too late in the day to avoid night time dryness. I too have problems eating and have had to totally change what I eat.

        Have you got access to a SALT? Mine gave me mouth moisturiser and non foaming toothpaste.

        Maybe try to see your GP and ask for something for anxiety. I take Mitrzapine. You still have time to wait till 17th May.

        Thinking of you and sending love. This is an incredibly hard journey but take one day at a time. It does get easier and a positive attitude helps.

        If you are on Twitter look for John Adams MND Warrior. The man is an inspiration.
        Diagnosed 3rd November 2021 Bulbar Onset

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          #19
          Hairbsb My first symptoms i think were cramps in legs, faciculations (muscle twitching), strange 'shivers' on left side of face/head, pain in the left hip and lower left back, and onset of footdrop in left foot. All these could be attributed to other ailments, so maybe not all of them presaged MND.

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            #20
            Michael Nicholas GillB thank you both x yes i will absolutely look John Adams up on twitter. I think they are awaiting a confirmed diagnosis from my neuro. Yes my anxiety and sadness need to be tackled pronto otherwise I'm no good to anyone least myself haha. Life will continue albeit somewhat differently. I find it interesting you know if something triggers it. Or it's like a time bomb which just goes off and everyone has different symptoms. Thanks for being so welcoming x

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              #21
              Hairbsb your diagnosis does seem to be taking a while. Maybe I was just ‘fortunate’ to be diagnosed quite quickly. The time waiting for a diagnosis is horrendous. Although devastated I got a diagnosis of bulbar onset als, it was a relief to be able to move on from that state of limbo.
              Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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                #22
                Hope thank you for your kind words. Yes I do so hope I move on from this state of strangeness and just accept it. Its mainly my speech that is getting me down right now. As I said to TinyLady in my mind my speech is super it's only when I open my mouth that it changes x

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                  #23
                  Hairbsb i have lost my speech now, I try to talk but even I can hear the words don’t sound right. It is hard to accept but I keep my focus on still being fully mobile at present. x
                  Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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                    #24
                    Hairbsb I'm dry as a bone of a night and I have to peel my lips away from my gums

                    You need a moisturising gel for nighttime like Biotene which my GP prescribes for me.

                    Bank your voice before you lose it/become unintelligible.
                    Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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                      #25
                      John D right I'm ready and armed with all this info that everyone has provided. On a lighter. Note I washed my hair and left it without blow drying it. My son said I looked like Boris Johnson and my husband said I look like Donald trumps sister haha. Don't think they are compliments do you?

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                        #26
                        Hope some random starting talking to me about microwave meals in sainsburys so I had to reply. When I replied I tried to say my speech wasn't great and he thought I was deaf and prodeeded to mouth his words and stick fingers up. I didn't have the energy to correct him. Was a good convo though and he was helpful anyhow

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                          #27
                          John D ill speak to the neuro next week when I go for my diagnosis and speak to the care team. You guys are a wealth of info. Really appreciated.

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                            #28
                            Originally posted by Michael Nicholas View Post
                            I've been on carbosisteine for many weeks without noticing improvement, and am also on glycopyrronium bromide which isn't working too.
                            Your doses may need to be increased Michael - tell your Doctor the meds are not working well enough and, if after tweaking the dose you're still having saliva issues, there are alternatives to glyco.

                            If the mucus is still thick and sticky, a saline nebuliser should help.

                            Another thing to bear in mind is to make sure you're getting lots of fluids each day.

                            Originally posted by Michael Nicholas View Post
                            problem related to the glyco is that my mouth becomes very dry when I'm asleep.
                            If the dry mouth is glyco related, take your last dose earlier or reduce the dose (ask your doctor if unsure) - I take my last glyco at 5pm.

                            Are your jaw muscles strong enough to stop your mouth falling open when you sleep? If your mouth is open even slightly, that could cause dry mouth too - my mouth hangs open, only for I wear a NIV mask with a humidifier, I'd have a mouth like the Sahara 😏

                            As mentioned above, there are products for dry mouth.

                            Hope you get sorted very soon. xx

                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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