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Thread: Diagnosed today.

  1. #1
    Forum Member
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    Diagnosed today.

    Hi, my name is Lisa, I'm 45, live on the South coast, single parent. My MND Diagnosis was confirmed yesterday by a consultant experienced in mnd. Still reeling (again!) But at least with this diagnosis I'm being put in touch with the mnd team in Southampton. Last time, when the registrar gave me a diagnosis my follow up appointment was in 15 months! (A mistake i think, think it was meant to be October this year not next year 😂&#128514
    My Doctor's referred me to neurology physio and the occupational therapist, is there anything else i should get set up?
    Its a relief in a way, at least i can stop searching the internet and hassling the hospital and things will get set in motion...
    So anyway, hello everyone from the South coast xx

  2. #2
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    Welcome Catsparkle. I am newish too, my Husband wad diagnosed with ALS 17/7. You will get loads of support and advice on here

  3. #3
    jamesob
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    Quote Originally Posted by Catsparkle View Post
    Hi, my name is Lisa, I'm 45, live on the South coast, single parent. My MND Diagnosis was confirmed yesterday by a consultant experienced in mnd. Still reeling (again!) But at least with this diagnosis I'm being put in touch with the mnd team in Southampton. Last time, when the registrar gave me a diagnosis my follow up appointment was in 15 months! (A mistake i think, think it was meant to be October this year not next year ����)
    My Doctor's referred me to neurology physio and the occupational therapist, is there anything else i should get set up?
    Its a relief in a way, at least i can stop searching the internet and hassling the hospital and things will get set in motion...
    So anyway, hello everyone from the South coast xx
    I'm so sorry to hear Lisa - you'll find that with the right support you can still have some of your brightest days after diagnosis with the right support network -and this forum is a great place to start!

    X

  4. #4
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    Thankyou Shrew, I'm sorry to hear off your husbands diagnosis x thankyou for the hello xx

  5. #5
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    Thankyou jamesob x i certainly have some fun things lined up, a steam train Santa ride on the isle of pushback in xmas eve to start!

  6. #6
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    Hi Lisa

    Sorry to hear about your diagnosis. I'd wait and see what your mnd team say. They might send you to a speech and language therapist along with a nutritionist just to make sure everything is good so far as you might need them later on. Try not to panic about such referrals especially if they ask you to see a palliative care nurse. They often do even early on in the disease. Take some time to get used to it all.

    Mick.

  7. #7
    Forum Member Ellie's Avatar
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    Hi Lisa and sorry to 'formally' welcome you to this club.

    Do you know which MND you have?

    You should ask for referrals to a Speech & Language Therapist (SLT), Respiratory dept (for baseline tests, if you have not done them) and an MND Nurse for now.

    It's true that it's a 'relief' to get a confirmed diagnosis - you can move on and organise things. I don't know about DS1500, PIP etc, but others do and will undoubtedly post info on them.

    Meanwhile, stay healthy, get the flu jab and pneumonia vaccine.

    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
    Forum Member Tim-griffiths's Avatar
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    Hi Lisa, sorry to hear about your diagnosis, you will find a lot of help and support on here, ask your doctor about a DS1500 form which he/she will fill out and send off, this should fast track you to pip ( personal independence payment ), hope you have plenty of family and good friends close by to help, hoping your child/ children are old enough to help too. Don't be scared to ask questions, no matter how stupid you think they are, sometimes the silliest of questions actually bring out the strongest information. Hope you get a good support team, dietician, Clinical nurse specialist, speech and language therapist ect.
    Tim and Mary

  9. #9
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    Thank you Tim and Mary. My GP is hugely sympathetic and massively supportive, I’ll ask her about the form. Southampton are supposed to have a good support team, certainly the clinical staff I’ve met there already have been ridiculously kind.. the consultant is setting all that in motion now. My daughters ten and will find it incredibly difficult to adjust to..it’s been just me and her living together since she’s been a baby (with my mum and dad as other parents and my partner very closely involved too). We are just so close to each other (literally too, my flat is tiny!) but we’ll get help to tell her as I understand it. Great tip about the questions! Lisa xx

  10. #10
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    Hi Ellie, thank you xxxxx and that’s perfect, I’ll make sure that happens. (SLT, resp, nurse), So far I’ve organised the whole flippin’ process, I’m so glad I did though or I wouldn’t have had the diagnosis for months if not a year. And that’s great about the jabs too, I’m SO prone to chest infections..I was an early years teacher (Nursery nurse) and you’d catch everything from them...maybe it’s not such a good idea to go back then eh.. love, Lisa x

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