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    CONFUSED and SCARED

    Hello

    I am scared and confused

    The Neurologist thinks I have diabetic neuropathy. I had a EMG in August and the Clinical Neurophysiologist thought it was MND but wanted to wait three
    months and repeat the test. Which was done Thursday by a different Clinical Neurophysiologist who said unfortunately it was MND. He typed the conclusion of his report for us to take with us when we see the Neurologist on Friday 12th. The conclusion actually stated it was most likely MND. He told us to contact the MND Association and request that the consultant refers me to a specialist MND nurse and starts me on a medication called Riluzole.

    Have I been formally diagnosed with MND or do I need confirmation from the Neurologist??

    Since July I have deteriorated from walking with a rollator to now being pushed in a wheelchair.I can no longer manage steps so I am unable to get out of the house until we can arrange for a ramp to be installed.Fpr hospital appintments I am lifted out of the house in a wheelchair by the crewThe GPS are not intersted and the Occupational Therapists have offerd tea and sympathy but no practical advice

    A friend went to a mobility shop for advice about a ramp and one is being delivered tomorrow and he will install it.

    We have some limited savings so independantly bought a stairlift and sit and stand seat riser.The Community Team initially did provide the rollator a wheelchair and other aids such as grab rails and a hospital bed. But help now or advice seems to have stopped.

    AT the moment the biggest problem at the moment day to day is the toilet.Sice July I have had incrreasing difficulty getting up from the toliet.My arms and legs have become far weaker. I have gone from a 4 inch riser to a 6 inch riser and now even with my wifes help cannot get up from it, We are now using pads which is very unpleasant for my wife and very difficult for me to go to the toilet.

    I have ordered a Solo Toilet Lift which currently will not be in stock until the end of November.

    But is this suitable for someone with MND?
    What aids or methods or other people used.?

    All advice or comments welocome

    I have posted this on the connect forum and introduce yourself forum. I apologise if this not the correct protocol

    Many thanks

    Steve










    .


    #2
    Hello Steve

    I am sorry that you've been going through all of this. The only person who can confirm a diagnosis of MND is a neurologist. You need to speak to them for some clarity.

    The Occupational Therapist (OT) should be carrying out assessments and providing suitable equipment. If there is equipment that they have assessed as being needed but they can't provide it, they can apply to us for funding. If you continue to have issues with the OT then please don't hesitate to give us a ring on 0808 802 6262.

    Best Wishes

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

    Comment


      #3
      Many thanks

      I have an appointment with the Neurologist on Friday.

      Until I get a diagnosis from him I presume I have no access to your help or the West Sussex Network Specialist Nurse. I have emailed her for advice about
      the problem of getting up from the toilet. I will also email the Social Services OT

      Neither available today by telephone

      Best wishes

      Steve


      Comment


        #4
        Yes, toileting is a problem but any good carer will be able to deal with it. It requires 2 carers.

        You definitely need to be fast tracked and be offered CHC asap. I'm afraid to say that the condition only gets worse.
        Copyright Graham

        Comment


          #5
          Thanks

          What is CHC?

          Comment


            #6
            Sunset1964 Some people with long-term complex health needs qualify for free social care arranged and funded solely by the NHS. This is known as NHS continuing healthcare (CHC)

            You can read about it here
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              Originally posted by sunset709 View Post
              Many thanks

              I have an appointment with the Neurologist on Friday.

              Until I get a diagnosis from him I presume I have no access to your help or the West Sussex Network Specialist Nurse. I have emailed her for advice about
              the problem of getting up from the toilet. I will also email the Social Services OT

              Neither available today by telephone

              Best wishes

              Steve

              Hi Steve

              We support people who may have MND or who have a suspected diagnosis of MND as well as those who have a confirmed diagnosis. You are very welcome to contact us on 0808 802 6262.

              Best Wishes

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

              Comment


                #8
                I have received referal form today from Jacqui. We will complete it as best we can and send it you bt email

                Thanks

                Steve

                Comment


                  #9
                  Thanks for link Ellie

                  Comment

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