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Thread: Worried mum may have bulbar onset mnd

  1. #1
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    Worried mum may have bulbar onset mnd

    Hi

    I would really appreciate some advice.
    My mum is 73 and on mertazapine since early 2017 for long term mental health issues. In may this year we noticed that she seemed more “drugged” on the mertazipine as she was much more relaxed than usual and slurring some words slightly, almost like she was a little tipsy.
    Fast forward 6 months the words are still slurred her speech is a little slower but we don’t really think it’s got worse since we first noticed in may, and she has no other obvious symptoms. My dad took her to the doctors last Friday, who apparently didn’t seem concerned re the speech- saying it wasn’t obvious since he didn’t know mum before. He did say though that she has a slight twitch in the back of her tongue, and he was referring her to a neurologist to “be on the safe side” he didn’t think the speech related to her medication.
    But I’m really worried now, my friends mum passed away from bulbar onset mnd and since the doctor mentioned the twitch I’m worried she may have it.
    I’m wondering if I can re assure myself that what ever it is, it doesn’t appear to have changed in 6 months? Mum doesn’t think anything’s wrong and she seems very happy in general.

  2. #2
    Forum Moderator MNDConnect's Avatar
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    Hi Aimee

    I am very sorry to hear that you are concerned about your mum. Twitching in the tongue is very rarely an initial symptom of motor neurone disease (MND). MND can cause twitching in the tongue but this is usually accompanied with visible wastage and tends to occur after other symptoms.

    MND can cause slurred speech. However, with MND this tends to progress quite quickly and after 6 months, if someone had MND you would expect their speech to be quite significantly affected.

    Have your mum's mental health team reviewed your mum's medication? It may be that they need to review the dose that she is taking and this might improve the symptoms that she is having.

    It is normal to worry about MND when you've experienced someone that you know having the disease, such as your friend's mum. There are various things that could be causing your mum's symptoms and being referred to a neurologist is good to find out what is causing it and maybe to offer some peace of mind regarding MND.

    Please do give us a call here at MND Connect, the helpline for the MND Association. Sometimes it can be really helpful to talk through your concerns with someone and we may be able to help with putting your mind at ease. Our telephone number is 0808 802 6262 and it's a freephone number so it wouldn't cost you anything to call.

    With Kindest Regards

    Rachel
    MND Connect Adviser

  3. #3
    Forum Member Ellie's Avatar
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    Hi Aimee,

    Another thing to rule out is a stroke or one or more TIA (mini stroke)

    Hope for the best.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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    Hi

    Thank you so much for taking the time to reply. I agree her medication should probably be reviewed and we can ask about this again (even though she’s the happiest she’s ever been while we are worrying)
    You have made me feel a lot better and hopefully it’s either the above or something else more treatable.

    Thanks so much

  5. #5
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    Hi Rachel

    I spoke to you on the phone around November last year about mum seeing the nurologist and I thought Id give you an update and get your thoughts if you dont mind.
    after the appointment you might remember I was very upset as he had told mum and dad that it may be a "progressive neuroligical disorder for which there is no cure" his inital examination found a jaw jerk reflex and her toungue was slow moving. he also wrote that there were one or two toungue facilations but he wasnt convinced they were significant.
    Its now almost 9 months since Mum started slurring her speech, and its definitley up and down rather than gradually getting worse. It was bad in October when I first moved back to be close to mum and dad, then over christmas it had improved and my sister also noticed this when she came to see us. Its almost like she has an "attack" and is really quite slurry and then she gradually improves although sometimes its different on a day by day basis. She had a cold recently and was struggling to gargle so there is some weakness in the throat although she eats big meals with no real difficulty. she gets a tickly cough sometimes which makes her sneeze, another odd thing is her eyes sometimes buldge out of the sockets and this sometimes looks worse than others!
    The most odd and obvious thing is she is a much happier laid back person. She has been on medication for mental health for 3 years however since May when the slurred speech issue began we noticed a marked difference in her personality.

    Her latest tests have been an MRI where the notes said brain was quite "atrophatic" but not too remarkable for her age. her personalitly has altered but her memory is very much in tact.
    She had an EMG which came back completely normal and the neuro wrote "no abnormalilties in the toungue throat or neck" which made me feel a little reassured with mnd but not sure if she could have the symptoms 8 months and it still not show up on EMG?
    She has also just had a lumbar punture which we havent heard back from yet however instincts tell me this will probably be normal as well.

    In some ways my mum is easier to get on with than ever and Im actually enjoying spending time with her (she was very difficult to live with before and she didnt show an interest in a bond/friensdship with me before in my 38 years)
    I just which I had some idea of what on earths going on with her.


    sorry this is so long


    Aimee

    x

  6. #6
    Forum Moderator MNDConnect's Avatar
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    Dear Aimee,

    Thank you for the update on your mum.

    Her symptoms are definitely confusing, after 9 months of slurred speech if her condition was due to MND you would expect significant deterioration by now. The fact that the EMG did not show up any abnormalities is reassuring, because after 9 months this test would usually pick up any weakness in the nerve signals reaching the muscles.

    The lumbar puncture is being used as an elimination tool, because her symptoms do not have an obvious cause the Neurologist is trying to look at every possibility that may be causing her symptoms. It was probably too early to make the assumption that she may have 'a progressive Neurological disorder' for which there is no cure, and I can understand why your parents were distressed by the comments.

    Bulging eyes is not a symptom associated with MND, have you discussed that with the Neurologist? Sneezing after coughing may be a reflex mechanism but if her coughing when eating does become more problematic it may be worth asking for a swallowing assessment, to rule out weakened throat muscles.

    Similarly if her cough becomes weaker she could possibly need an assessment on her breathing muscles.

    MND can cause personality changes, however as she is taking medication for her mental health this may also have an effect on her mood.

    Does she have a follow up appointment with her Neurologist? Even if there is not an appointment scheduled, if you notice any changes or deterioration with her symptoms speak to the GP about a referral back to neurology.

    If you have any questions please do not hesitate to contact us Aimee.

    With kind regards
    Jacqui Anderson
    Senior MND Connect Adviser

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