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    Scared and confused

    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


    #2
    sunset709 welcome to the forum. I'm so sorry you find yourself in the position being eligible to join us but will say this is a great place for advice & support.

    I can't help regarding the toilet lift however others here may be able to. The search engine is also useful for looking at old threads on equipment etc.

    Doesnt seem right that you're not getting continued support from your Community Team....maybe that needs chasing up?

    I was initially diagnosed in April by a neurologist with a 'probable MND' before a second neurologist confirmed in June. That seems to be the standard process.




    ​​​​​​





    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

    Comment


      #3
      Originally posted by sunset709 View Post
      Have I been formally diagnosed with MND or do I need confirmation from the Neurologist??
      That is a question *only* your Neurologist can clarify.

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

      Comment


        #4
        sunset709 Welcome to the forum, I am sorry you have had to join. You are amongst an amazing bunch of people who have, or their loved ones have, this horrible disease. Here you can laugh, cry, shout, scream and ask questions, we have all done it and continue to do so.

        Unfortunately there is no definitive test that proves a person has MND. The only way it is usualy formally diagnosed is after someone has had a bunch of tests, sometimes over a period of two years, when every disease that mimics MND can then be discounted and MND confirmed. However the specialist consultants know MND extremely well and their expertise frequently allows them to conclude very early on that it is MND.

        If you have not done so do telephone the MND Assocoation tomorrow, they will be able to provide you with lots of advice and guidance and also for your wife. Whilst I have MND I know that being a carer is very difficult and tehy can offer her some suppport as well.

        I wish you the best of strength and look forward to getting to know you.

        RICHARD

        Richard

        Comment


          #5
          sunset709 I echo Richards comment about contacting the association tomorrow. MND can be a cash hungry disease that requires careful consideration before spending, that’s why it’s important to get good advice.

          Comment


            #6
            sunset709 I think that you need a wash and dry toilet like a Closomat and a shower chair that can go over that. Then your wife can push you to the loo and the wash and dry loo will clean you before she wheels you back. Speak to whomever you have in terms of support services or speak with MND Connect for advice. Good luck. Lynne x
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

            Comment


              #7
              Welcome sunset709 sorry to meet you but happy to greet you. You'll find we're a pretty relaxed and laid back bunch here. Please feel free to ask any questions you may have. Stay Strong 💪😁🤗😍xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

              Comment


                #8
                Thanks for all the comments and god wishes

                Comment


                  #9
                  Sunset1964 On 14 September, you wrote:

                  Originally posted by sunset709 View Post
                  I have been diagnosed with probable MND.
                  You already have a diagnosis of MND. So now I'm the confused one 🤔 I don't really understand the reasoning behind your most recent post wondering about your diagnosis. xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    In August the Consultant doing the emg said it looked like MND but was unable to give a firm diagnosis so said rerpeat thes tests in 3 months.
                    The Neurologist who requested the test still thought it could be Diabetic Neuropathy.
                    Second egm on Thurdsay the consultant said it was MND and his report conclusion would say most likely MND/
                    I see the Neurologist on Friday 12th.
                    So my question is do I have to wait for ther Neurologist to conffirm MND
                    The people doing the tests were Clinical Neuro Physiologists.

                    Comment


                      #11
                      Originally posted by sunset709 View Post
                      So my question is do I have to wait for ther Neurologist to conffirm MND
                      Sorry, I'm still no clearer - don't you have a diagnosis of Probable MND already?

                      Either way, you need to sit down with the Neurologist on Friday and hear what's said - an EMG is only part of the diagnostic process. Don't be afraid to make notes and to write down any questions you may have, our brains can go to mush when we're stressed. xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        Thanks I will discuss with the Neurologist on Friday. My wife will take notes.

                        My wuestion been answered this morning. The Neuro;ogist on Frday is the peron who must refer me to the MND sussex Network which includes the Specialist MND Nurse

                        Thanks xx

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