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Thread: Hello

  1. #1
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    Hello

    Hi,

    I just wanted to introduce myself, i'm a female age 42 from Ipswich Suffolk. I am under a neurologist at the moment for another condition which is a dysfunction of the sensory nerves. Its called a neuronopathy. I've had it now for about 6 years, this causes all sorts of weird things going on like twitching, burning etc. They never got to the cause so it's labelled as idiopathic, so i'm under something called 100k genomes project to see if they can find a rare genetic cause.

    I spoke to my neurologist yesterday on a telephone appointment as i had been having some swallowing issues, i saw him in January and we had a plan to do an endoscopy and possibly swallow study. The issues which started last May 2019 started with a delay with the swallow, like a muscle contraction, had some funny signs probably around Xmas 2018 with neck pain, and stabbing in side of the neck then almost like a globus/strained throat sensation. The neck pain has gone but swallowing symptoms have remained the same up until now. He called me as we needed a plan as everything has been cancelled due to covid 19. I tried to explain to him on the phone i had been having very subtle issues with speech and mis-pronouncing words which had been going on since Dec 2018. He dismissed this and said my speech was normal. He did not reassure me about my concerns re PBP ,which i was hoping he would do.

    I have been very concerned about these symptoms, but i understand from what i have read and speaking to the lovely team here online is that its not just symptoms but its actually how the symptoms progress. Whatever is causing these issues seem to be progressing very slowly, it is so bizarre...I understand mine does not seem to fit the full picture PBP, as i think i would be worse by now.

    The neurologist has asked me to test for Mathasina Gravis ( i don't think this is the cause) and because i am not choking or lost weight he felt i should wait until after Covid 19 to get the endoscopy.

    I feel so anxious at the moment. I work for the NHS myself, but have been signed off with anxiety over the whole thing.

    Even though my neurologist is very very good, he just isn't good at reassuring. I don't feel reassured i just feel left in limbo..

    The other thing which makes it difficult is that i have another condition, and because they don't know the cause, its not
    sure how this will progress and if it will affect motor nerves, my neurologist seems to think this is not related, but how the symptoms presented, my first thought that it was the nerve condition causing these problems...I
    Sorry to hassle you on here.

  2. #2
    Forum Member nunhead_man's Avatar
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    Good morning Frosty,

    Welcome to the forum.

    I'm sure somebody more knowledgeable than me will come along in a moment but this does not really sound like motor neurone disease to me.

    We need somebody to post who is familiar with the bulbar version of MND but speech loss is rarely the first sign of motor neurone disease.

    I cannot think of any other time when the background level of anxiety has been so high as it is now.

    So my advice would be to wait and see how things develop – my experience of my neurologist was that he was very supportive but in the end cannot offer cures for this horrible condition and so as he said himself his support has limits
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  3. #3
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    HI Andy,

    Thank you so much for replying.

    Yes, will just have to wait and see what happens. My speech is probably 95% fine. Its just this pronouncing words which are bothering me. I have had a few chats with the staff on line who have been very helpful. They said they can't see anything wrong with my speech but you know when you can notice something isn't quite right. I do agree with them that if it had been going on since February 19 then it should be probably worse by now.

    I really need to book in for this other blood test the neurologist has asked me to do. Its just the waiting for results makes me anxious.

    Thanks again for the reply,

    Katherine

  4. #4
    Forum Member Ellie's Avatar
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    Frosty, I don't know what would give you the reasurance you're after if, having spoken to your "very very good" neurologist and to the MND Helpline several times, you still are in the mindset that you have PBP. I truly hope you get to the root cause of your issues, and soon.

    Hopefully you are getting help for the anxiety which has kept you from working - it has stolen so much from you already.

    Take care.

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

  5. #5
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    HI Ellie,

    Thanks, you are right. I know i need to deal with it.

    I'm sorry to bother you on this site.

    Best Regards

    Katherine.

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