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    #16
    Hi Ange, I got contacted within a week from diagnosis by MND nurse and then hospice.Having the hospice nurse arrive sent me into orbit as thought they must be expecting a quick death.Not the case....the nurse to introduce the service and a baseline assessment.
    My hint would be get a notebook and write names and contact numbers in and a brief summary of what they do.
    I rarely see my GP as no need as have support from palliative care team in community and local hospice.
    Then I have regular respiratory appointments, check ups with a neurologist, zoom sessions with a psychologist 6 weekly.
    I really hope you get contacted soon by health professionals to offer support.
    Best wishes
    Mary x

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      #17
      Thank you Mary, for the information given, can i ask are you on a medication called riluzole.

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        #18
        Ange Do you know what type of MND you have Angela?

        You seem to have slow progression given your long road to being given a diagnosis, which might have an impact on which services should be priortised for you. xx
        ​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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          #19
          [QUOTE=Ellie;n66930]Ange Do you know what type of MND you have Angela?

          You seem to have slow progression given your long road to being given a diagnosis, which might have an impact on which services should be priortised for you. xx[/QU
          Yes the consultant did say it's slow progressing. I am starting a drug called riluzole, have you had this med

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            #20
            Ange Yes, I've been taking Riluzole since being diagnosed.

            Initially it made me tired but that lessened with time. If you take it, you will need regular blood tests to keep an eye on your liver function. xx
            ​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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              #21
              Hi Ange ,I took riluzole initially as neurologist was advising me to do so.I later decided I didn’t want to continue with it as my neurologist said he thought it might just give me a few extra months.I don’t want to extend my time with MND.

              Its a personal decision Ange and I suggest you seek neurologists opinion ...you can always change your mind at any point.
              Best wishes
              Mary x

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                #22
                Hello Ange ,
                just so you don’t feel alone, and try a reassure you, I am slow progression (2 years) I have never seen SALT , or seen OT , our health authority doesn’t even have a specialist nurse , my only contact is with bimonthly physio who just monitor my progression. And a 6 monthly consultant review.
                it could be that yours doesn’t need full on contact yet, we are all different and services will be based on need. It will be trundling along and you will be in system, but in these COVID times everything else has taken a back seat
                If you are feeling lost in the system, which does happen get a GP appointment, or contact your consultants secretary and ask ,what happens now

                s
                As long as there’s golf and beer I’m happy

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                  #23
                  Mary C You're singing my song soul sister. ✌️♥️💐😘xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                    #24
                    Hi Ange welcome. I joined just 2 days before you. Getting the diagnosis is a very lonely feeling but the welcome here is heart warming. Wishing you all the best. x
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                      #25
                      Yes must admit Rosemary6NT, it was quite a shock, as one neurologist ruled it out, so started thinking must be something else, so such a shock when the new neurologist said I had mnd, even my family was reeling from the shock. I struggle each day as I walk with a Zimmer frame and always fearful of falling, my right hand isn't working correctly now, what next I ask myself. Luckily i have a younger brother who calls every night from work, bless him. Got a meeting with neurologist on the 16th, so wrote something's I want to ask. GPS organised blood tests and I haven't even got the med riluzole, what a laugh, going to change GPS.

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                        #26
                        Ange I'm no expert but I think the neurologist has to prescribe Riluzole in the first place, it was some weeks before I got mine.
                        Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                          #27
                          Originally posted by Ange View Post
                          GPS organised blood tests and I haven't even got the med riluzole, what a laugh, going to change GPS.
                          No, that's probably for baseline data - need to know what your normal liver enzymes etc. are before starting Riluzole. xx

                          ​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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                            #28
                            Hi Ange this happened with me. I live in West Midlands & basically mnd nyrse was very slow & didn't refer me to anyone. I spent weeks chasing different debts and my useless g.p practice. In the end I logged formal complaint siting the gold standard re terminal illness & bang all of a sudden I got some help. Please complain.

                            I think you need firstly to go through pals at the hospital you were diagnosed at. Ask for urgent contact from mnd nurse. Then g.p refer you to palliative care team urgently. Please be assertive and get what you rightly deserve x
                            Diagnosed May 2021 bulbar onset als.

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                              #29
                              I am under the Royal Stoke hospital and once I got the diagnosis all hell let loose and I am inundated with OT, Physios, and a support nurse who answers my email within the hour.
                              My GP practice is also helpful.
                              I can't complain at all.
                              It's all funny

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                                #30
                                The hard bit is getting that first appointment at the hospital and where a good GP comes in who will push them.
                                It's all funny

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