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Thread: Newly diagnosed, nice to meet you all.

  1. #1
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    Newly diagnosed, nice to meet you all.

    Hi everyone, my name is Jacqui and I had my diagnosis confirmed last week, which my neurologist had told me she suspected in December.

    My legs are significantly affected and seem to be deteriorating as each week goes by, and now my speech and chewing is also starting to be more affected.I have found it hard to adjust at times from initially needing to use a stick, then a rollator, and now with the prospect of needing a wheelchair, and wondering what I do for the future in regards to managing in my home. I really feel I am a rollercoaster with my emotions.

    My neurologist advised that she would refer me to Kings so that they can discuss with me starting on Riluzole, as it needs to be monitored carefully. However I was also told that there is 3-4 month delay in being seen is this usual? I worry that if there is a delay I am not going to benefit. What are your experiences and do I need to be concerned.

  2. #2
    Forum Member Terry's Avatar
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    Hi Jacqui and welcome to the forum;

    Sorry to hear of your so recent diagnoses, it must be so raw.

    Normally the neurologist prescribes reluzole straight away, maybe a cost thing so ask your GP.

    It seems that a two or three month delay is normal before meeting your team.

    Please feel free to ask any questions or share things with us.

    Best wishes, Terry
    Last edited by Terry; 27th January 2020 at 20:46.
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Forum Member Shaun's Avatar
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    Hi
    Regarding cost of riluzole (Rilutek) 1x56 50mg . Just under a month's dosage is 242.39 (excl VAT)
    My consultant prescribed me 3 month's worth on diagnosis day, bargain for prescription fee of 9
    ( Have a copy of shared care letter to GP),
    There are side effects, but so far my last two blood tests showed no liver kidney issues
    Get on to your GP might help slow it down
    Shaun

  4. #4
    Forum Member Shaun's Avatar
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    Hello again Jacqui?
    Just thinking about your chewing, perhaps they considered swalllowing may cause issues, riluzole can be crushed but think it may not be as good. It is monitored for liver and kidney function it can also make you neutrapenic, so they may considered the risks too high . Your GP may be able to look at recent blood tests and advise. You may have to armed with your own info on this, as my GP had never heard of it. Riluzole may only slow things down a bit
    Hoping you get to see Kings quickly
    Shaun

  5. #5
    Forum Member Ellie's Avatar
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    Hi Jacqui,

    Sorry to have to meet you in such circumstances but a warm welcome to the Forum.

    Yes, it is a difficult emotional rollercaster and it can be one long ride during which we all yell, "stop, I want to get off!!"....

    It can be hard to keep up with progression, which is why it's vital to have an OT (Occupational Therapist) do you have one?

    I do think 3 months is long to wait for a referral to King's MND Clinic - could your own Neuro put you down as an urgent referral? MND Clinics have access to Speech & Language Therapists, OTs, Physiotherapists, Clinical Trials etc etc. King's Clinic is highly regarded.

    Take care Jacqui and please try not to feel overwhelmed - we are only too happy to help you.

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

  6. #6
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    Hi, I have already had some input from a OT, which has been great both from social care and the nhs falls clinic, however I think the OT at the hospice will be the main person who will be working with me, as advised by my local MND GROUP. My local neurologist is referring be to speech and language, respiratory team and a neuro physiotherapist.

    I think the issues with Kings is capacity, and it is taking 3 - 4 months from her referral being sent to being seen by Kings.

    In regards to the medication it will be something I will need to discuss as I am on a biologic and other medications that affect my immune system.

  7. #7
    Forum Member Ellie's Avatar
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    Oh, I'm glad you'll be linked into your hospice, they have great knowledge and resources - hopefully you'll even be offered a massage or other complementary therapy.

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

  8. #8
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    Hi Ellie, what I would love is Jacuzzi. I had a girls weekend away last week and it helped so much. Think I will have to plan another weekend away.

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    Hi jacqui,
    Welcome to this very friendly forum, there is lots of advice on here, try and take one day at a time.
    Sheila

  10. #10
    Forum Member Lynne K's Avatar
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    Hi Jaqui, welcome to our friendly helpful forums. I'm sorry that you find yourself on this horrid journey with us.

    I too got a 3 month supply of Riluzole at diagnosis day from my neurologist. She wrote to my GP with a summary of my symptoms, an explanation about MND and breakdown about what Riluzole does. She instructed them to prescribe it 3 monthly after checking my bloods (to watch for side effects in my liver).

    I haven't had any side effects. But we are all different and it's important for everyone to be monitored.

    The benefit of Riluzole has been descibed as 2 or 3 months, but recently it was mentioned on forums about a recent trial that claimed that the resultant extra time was eighteen months. Whichever it is it's important to get started on it asap. A talk with your GP could be helpful. Good luck.

    I'm glad that you have been linked in to your local services. I hope that they sort you out with a suitable wheelchair quickly and advise about adapting your home for easier wheelchair access and bathing facilities (wet-room).

    Hugs, 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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