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Advice please - Mum possible MND

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    Advice please - Mum possible MND

    Hi, I hope it is ok for me to post here as we are still very early on in the diagnosis process. My mum is age 69 and lives in the Hants/Dorset area, UK and has so far been treated in Southampton. She lives alone and over the past 18 months we have noticed a change in her way of talking which this year has progressed to a much slowed, fairly slurred speech. Along with this, she often chokes on her food and her walking speed noticeably slowed last year. By July of this year she started using hiking sticks to walk due to significant muscle deterioration in one foot. She is more prone to fall and often seems to have trouble finding her words. She says it feels like there is something wrong in her throat. We have also noticed that her personality has changed. She seems less aware of what is going on around her, she does not engage in conversations in the same way she used to, but actually in general seems lighter and happier than she has before.

    We have been around the houses a bit with a diagnosis. Initially the GP referred her for blood tests, MRI and memory tests suspecting vascular dementia, however her memory tests were good (excellent in fact) and the MRI showed no signs of stroke or significant vascular degeneration. At the time they also made no connection with her "bad" leg and thought this was a separate issue. More recently she has been referred for a neuro-physiological examination which involved electric shocks to test the nerves. We have not had the results of this and the technician didn't say much except that her nerves aren't working properly and her muscles are wasting away. He also said that the other leg has started to lose strength too. At some stage one of the consultants mentioned MND to us and after reading a little about it the symptoms do seem to line up. Apart from possibly the detioriation in her cognitive function - is this ever part of MND as well?

    I am not sure if there is much that you can tell me on here other than whether this is a familiar story to any of you? I am also wondering if anyone else has been treated in Southampton for this or whether we should be taking her to a specialist in London or elsewhere? Is there any benefit to us trying to get a private diagnosis to speed this up? My siblings and I feel massively in over our heads and hugely uninformed about this. The one thing we do know is that her deterioration since March of this year has been so rapid and we are finding the 4-6 weeks between appointments/results hugely frustrating. In the meantime we have no idea whether she should still be driving (she is driving just short trips) and whether it is ok for her to be living on her own. She is still relatively independent but at the same time doesn't really seem to be registering what doctors are saying - which is fairly understandable given the mixed messages we've had so far.

    Sorry for the long message and thank you to all of the brave people on here facing up to this and still taking time to post helpful advice for people like me!

    #2
    Hi, sorry to read your mum's story. Whilst you're waiting for MND Connect to reply, may I ask if she is being seen by the MND Specialist in Southampton?

    Love Ellie.
    ​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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      #3
      Thanks Ellie, this is precisely the problem, I don't think so and I don't even know who that would be? How do we get referred to them or do we have to wait for the neuro consultant to hand us over to them?

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        #4
        Ask her current Neurologist to urgently refer her to the MND Care Centre. I looked it up: https://www.uhs.nhs.uk/OurServices/B...arecentre.aspx

        Even with Covid, I think she should be seen and evaluated in person (with the proper precautions) and then you will all know what you're dealing with.

        And yes, there are people here who are under the care of the Southampton Clinic.

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

        Comment


          #5
          Hi,

          Thank you for your forum post. I am so sorry to hear about your mum.

          As very kindly suggested by Ellie, you could reach out to the MND care centre in Southampton. The care centres are centres of excellence in MND, where people do go when they have a doubtful diagnosis or for a second opinion. They each have an MND specialist nurse who coordinates the clinic and a neurologist who specialises in MND. If your mum would like to see one of the specialist neurologists there, you could ask her consultant or GP to make a referral for her. The care centre co-ordinator at the Southampton care centre is a lady by the name Clare Erridge. Clare can be contacted by phone on 02381 206544 or via email at [email protected]

          We produce an information sheet that explains the role of the care centres in further detail, that you can view here https://www.mndassociation.org/app/u...d-networks.pdf

          I do hope this is helpful.

          Kind regards,
          Prachi
          MND Connect Adviser

          MND Connect
          Contact us on 0808 802 6262 or at [email protected]


          MND Connect
          Contact us on 0808 802 6262 or at [email protected]

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            #6
            Ellie and Prachi, Thank you so much for your replies, really helpful!

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              #7
              I’m sorry to hear about your mum. You all must be very worried. There is a form of MND that has cognitive symptoms but your mum might not have this. Have you considered that she may be more quiet because of the effort she has to make to communicate? Forgive me if you’ve already eliminated that possibility. Good luck with a referral to the Southampton Care Centre, Lynne
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
              I'm staying positive and taking each day as it comes.

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