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  1. Replies
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    Dear Mikael, I am sorry to read that you have...

    Dear Mikael,

    I am sorry to read that you have been experiencing symptoms for over two years now with no obvious reason why.

    By posting on this forum I am assuming you are concerned that your...
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    908

    Hello Bretange, I was so sorry to hear of your...

    Hello Bretange,
    I was so sorry to hear of your recent health problems. Many healthy people experience muscle twitching, and these are not usually a cause for concern. Often this symptom can be...
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    3,887

    Hi TAPG1 I am sorry that you still have...

    Hi TAPG1

    I am sorry that you still have concerns and to hear that you are worried.

    As we've discussed previously, facial twitching in the way you describe would not be a typical symptom of...
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    3,887

    Dear TAPG1, We are currently in the process of...

    Dear TAPG1,

    We are currently in the process of looking into this for you.

    We will let you know as soon as possible.

    Kind regards
    Jacqui Anderson
    Senior MND Connect Adviser
  5. Replies
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    602

    Dear Sarah, I am so sorry to hear how you and...

    Dear Sarah,

    I am so sorry to hear how you and your wife are struggling with your relationship in the face of the enormous strain this disease is putting you under.

    Does your wife have anyone...
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    572

    Hi Mickey18, I am very sorry to hear that you...

    Hi Mickey18,

    I am very sorry to hear that you are concerned about possible MND. It’s understandable that you feel at a loss. Waiting for answers can be so difficult and worrying.

    If it would...
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    451

    Hi Jordan, I am very sorry to hear that you...

    Hi Jordan,

    I am very sorry to hear that you have been experiencing these symptoms that are concerning you.

    I believe you have just had a telephone conversation at length with my colleague...
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    1,018

    Hi Tapg1 As we discussed the other day,...

    Hi Tapg1

    As we discussed the other day, tingling and pins and needles are not symptoms of MND. These are caused by sensory nerves which are not affected by MND.

    If you stick your tongue out to...
  9. Replies
    42
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    3,887

    Hi Tapg1 It was nice to speak to you this...

    Hi Tapg1

    It was nice to speak to you this morning. I am sorry that you are still worried.

    As we discussed this morning, if you had muscle wastage, you would know. Muscle wastage can be seen...
  10. Replies
    42
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    3,887

    Hi Tapg1 Twitching on it's own would not...

    Hi Tapg1

    Twitching on it's own would not normally be considered a symptom of MND.

    MND can cause weight loss but so can many other things and again, you would expect to see other symptoms.
    ...
  11. Replies
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    3,887

    Hi Tapg1 Twitching is something that can be...

    Hi Tapg1

    Twitching is something that can be felt and is something that is experienced by about 70% of the population. For the majority of those people the twitching is caused by stress and...
  12. Thread: What Now?

    by MNDConnect
    Replies
    58
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    3,709

    It sounds as though having a communication board...

    It sounds as though having a communication board may help things as it will make communication much easier for your Gran which will hopefully help with her frustration at being understood. If the...
  13. Thread: What Now?

    by MNDConnect
    Replies
    58
    Views
    3,709

    Chrissie, you do so much for your Gran. Far more...

    Chrissie, you do so much for your Gran. Far more than should ever be expected of you. Having a loved one in a care home can be so difficult as they are always short of staff and rush to get things...
  14. Thread: What Now?

    by MNDConnect
    Replies
    58
    Views
    3,709

    Hi Chrissie I'm sorry to hear that you've not...

    Hi Chrissie

    I'm sorry to hear that you've not been well. It sounds harsh but sometimes you have to put your foot down and put yourself first. You aren't well and you need to look after yourself....
  15. Thread: What Now?

    by MNDConnect
    Replies
    58
    Views
    3,709

    Dear Broostine, I am so sorry to hear how...

    Dear Broostine,

    I am so sorry to hear how distressed you are about your Gran's situation.

    Would you like to message MND Connect directly on: mndconnect@mndassociation.org to enable us to...
  16. Thread: Help needed

    by MNDConnect
    Replies
    12
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    1,619

    Hi anxious It is really difficult when you've...

    Hi anxious

    It is really difficult when you've lost someone with MND, to not worry about symptoms. It's completely normal to do so.

    However, we've spoken quite a few times and nothing you've...
  17. Thread: Help needed

    by MNDConnect
    Replies
    12
    Views
    1,619

    Hi anxious I'm sorry to hear that this is...

    Hi anxious

    I'm sorry to hear that this is still worrying you. Again, nothing that you have described would be considered a normal, typical presentation of motor neurone disease. Whilst people...
  18. Replies
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    672

    Dear Michvw I can understand how frustrating...

    Dear Michvw
    I can understand how frustrating this must be for your husband and yourself, not knowing whether your husband will be given a diagnosis or not.
    Because double incontinence is not a...
  19. Thread: What Now?

    by MNDConnect
    Replies
    58
    Views
    3,709

    Hi Broostine Please could you send me the...

    Hi Broostine

    Please could you send me the SLT's name and telephone number by email to mndconnect@mndassociation.org or give me a ring on 0808 802 6262.

    If your Gran is happy for me to know her...
  20. Thread: What Now?

    by MNDConnect
    Replies
    58
    Views
    3,709

    Hi Broostine Ellie and Terry have given some...

    Hi Broostine

    Ellie and Terry have given some really good suggestions. A lightwriter is quite simple to use and can be a really effective way to communicate that uses technology but isn't...
  21. Replies
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    3,887

    Hi Rachel I am very sorry to hear that your...

    Hi Rachel

    I am very sorry to hear that your mum has been advised that she has "probable MND".

    Does she have any symptoms other than the fasiculations? It's very rare for someone to have...
  22. Replies
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    Dear Panniertank, I am so sorry to hear about...

    Dear Panniertank,
    I am so sorry to hear about your ongoing difficulties and concerns in relation to your mobility problems.
    From your previous post, I understand that your physiotherapist takes...
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    Hi Aimee I am very sorry to hear that you are...

    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...
  24. Replies
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    761

    Hi Ash I believe we may have spoken a couple...

    Hi Ash

    I believe we may have spoken a couple of times on the helpline and I am very sorry to hear that your symptoms are still concerning you. As we've previously discussed, your symptoms and...
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    Hi Hayls Congratulations! I'm so glad that...

    Hi Hayls

    Congratulations! I'm so glad that you had a good day.

    Even without emotional lability, not taking Sertraline for a few days would often cause emotional symptoms. The not taking the...
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