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Thread: any advice please

  1. #41
    Forum Member Ellie's Avatar
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    What worries me about your situation TAPG1 is that you’re so focused on MND being the only possible reason for your symptoms, that you’ve fallen down a rabbit hole from which it’s very difficult to climb out. You can only perceive you must have MND and that perception has become your reality - that’s a very frightening place to be

    But, by continuing to seek advice only on MND, you’re neglecting your mental health, which is as important as your physical health. I’d love you to concentrate on reducing your crippling anxieties, which are consuming your life right now, rather than posting on this Forum and to be able to enjoy life. If you could get continuing help for your anxieties and get control of your mental health, it would improve your life immeasurably.

    I have lived with MND/ALS for 13 years now and have learned such a lot about the disease and from the disease over time and, whilst I’m not an expert in any shape or form, I find that I often know more about MND than many a healthcare professional I’ve met.

    Genuinely, I wish you well in seeking and finding treatment.

    Love Ellie.
    Last edited by Ellie; 4th December 2019 at 11:23.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #42
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    Ellie, Your post has me crying. You just you have it all so right, I am in a very frightening place at the moment with all these symptoms as they are all pointing to one thing which lm not going to go into again. I have an apt Thursday morning with a professional who specialises in anxiety/mental health and hopefully he will be able to help with how lm feeling. I don't want to be on this forum or posting about my symptoms but l know deep down inside something is wrong, have you ever felt like that? Thank you for the reply Ellie and l wish you the best.

  3. #43
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    Hi rachel123 - just wondering how you are doing? My mum also has MND and itís a lot to get your head around. How are you all coping now?

  4. #44
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    Just an update on how l got on yesterday especially for Ellie as l know you were quite concerned about my mental health/anxiety and l know a lot like to know how somebody gets on. l had an apt with psychiatrist who also trained as a neurologist then branched out into psychiatry, a lovely gentleman who was very kind and listened to me and advised that l go on medication which l started this morning for my anxiety😭😭. He is referring me back to the MND specialist because of my new symptoms, my slight slurring of some words, and the feeling in my chin plus the saliva on the inside of my mouth and cough, not coughing when lm eating just on and off. l am now terrified as l know this is not good but at least l am being listened to and hopefully will get to the bottom of this sooner rather than later. I feel deep down inside these are bulbar symptoms, maybe lm wrong (praying l am)😭 but l think we are always right, are we!. Thanks to all for the replies and advice over the last few weeks and l will let ye know how l get on with my apt if ye want!

  5. #45
    Forum Member Ellie's Avatar
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    Thanks for the update and I'm so glad that you seem to have clicked with the psychiatrist.

    TAPG1, please don't feel any shame whatsoever in needing to take antianxiety meds (no need for crying emojis!) Anxiety is as real an illness as hypertension is and you wouldn't feel bad having to take meds to lower your blood pressure.

    As I'm sure you've been told, the meds can take time to kick in, so don't expect to feel better instantly.

    Yes, please do let us know how your neurology appt goes.

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

  6. #46
    Forum Moderator MNDConnect's Avatar
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    Dear TAPG1,

    Thank you for updating us regarding your appointment with your psychiatrist.

    Hopefully, once your medication starts to work you will be able to look at your symptoms with more clarity.

    Those new symptoms you have mentioned to your psychiatrist, would not happen overnight and certainly not happen at the same time.

    It is to be hoped that once you have seen the MND Specialist you will be reassured your symptoms are not those of Motor Neurone Disease.

    For your mental health I hope you can find peace of mind very soon.

    With kindest regards
    Jacqui
    Senior MND Connect Adviser

  7. #47
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    Thank you Ellie and MND Connect for your replies and kindness. I'm not embarrassed about admitting l have anxiety or that l needed medication for it. Ellie talking to you through mgs gave me the courage l needed and thank you so much. Your better than any GP or neurologist. I know lm not going to feel better overnight it will take 6 to 8weeks but today is day 1 and l did it not just for me but for my two little children. MND Connect lve had the symptoms since July on and off that's what's scaring me but l will deal with it if l have to. Nobody can tell me what's causing the nausea and sometimes sweating! I know that's not a symptom. I have a wedding today and lm so nervous about having to talk or if the twitching is noticed...hopefully l'll get an apt next week or the following and l'll let ye know how it goes xx

  8. #48
    Forum Member Ellie's Avatar
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    No, TAPG1, I've just developed a different perspective on life, having lived this long with ALS/MND !!
    Last edited by Ellie; 6th December 2019 at 14:31.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #49
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    Ellie your amazing x

  10. #50
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    Can someone if you don't mind explain to me about weight loss and what causes it with mnd...does this happen in the begining even before someone might be diagnosed and would it happen with bulbar onset? Does anyone think after 5mths you should be showing signs of weakness or does that happen with bulbar onset?

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