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Potential Diagnosis for elderly father (89)

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    #16
    You may want to screen for MND genetically John. It is far from rare as Peter noted. 20% have a genetic linkage and recently some sporadic cases have been discovered to have genetics.

    There is a potential opportunity for your entire family to be screened for future reference and one would hope treatment 30 years hence.

    Alzheimer's is a feature of some kinds of MND.
    Copyright Graham

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      #17
      Originally posted by John_1971 View Post
      I have no reason to believe this appointment relates to the recent suggestion my Father is suffering from MND. It was made following his recent diagnosis of mild Alzheimers.
      That makes sense.

      Originally posted by John_1971 View Post
      Is suspected MND something a ‘neurologist’ might refer on again? We could do without being passed pillar to post.
      That would be my worry, unless this Neurologist is familiar enough with MND itself and with MND-related dementia - frontotemporal dementia (FTD) occurs in a significant minority of people with MND - and identifies FTD in your father, then he might be referred directly to an MND Specialist for further clinical and diagnostic testing.

      Originally posted by John_1971 View Post
      Do you think we should write to the neurologist to avail them of the situation?
      Did his/will his GP get notication of your father's A&E admission which can be passed on to the hospital? Either way, I should think the A & E Doctor's comment is clinically significant and should be brought to the attention of the Consultant Neurologist (who may choose to ignore it...)

      Assuming you know the Neurologist's name, you can google the name and check their credentials.

      Love Ellie.
      ​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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        #18
        Originally posted by Graham View Post
        You may want to screen for MND genetically John. It is far from rare as Peter noted. 20% have a genetic linkage and recently some sporadic cases have been discovered to have genetics.

        There is a potential opportunity for your entire family to be screened for future reference and one would hope treatment 30 years hence.
        Alzheimer's is a feature of some kinds of MND.
        Yep, all in good time. We need to see if my Dad even has it. It’s not something I would shy away from, but I’m not speaking for my siblings nor niblings.

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          #19
          [QUOTE=Ellie;n69842
          Did his/will his GP get notication of your father's A&E admission which can be passed on to the hospital? Either way, I should think the A & E Doctor's comment is clinically significant and should be brought to the attention of the Consultant Neurologist (who may choose to ignore it...)

          Assuming you know the Neurologist's name, you can google the name and check their credentials.

          Love Ellie.[/QUOTE]

          Thanks as ever Ellie. I’ll get onto this and check what is what.

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            #20
            John_1971

            Sorry to hear of your father's trials.

            It is usually a neurologist which diagnosis MND.

            If my husbands muscle weakness had not been in both arms, I would have thought he had had a stroke.

            And in my investigations on line, many people have been diagnosed with stroke or other things.

            They were investigating arthiritis with my husband, due to hand onset.

            Most doctors will take the opinion of another doctor (A and E) into consideration.

            Hope your dad and family get support.


            Carer of husband diagnosed MND in July 2020
            Donna

            Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

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              #21
              Just a quick update.

              The neurologist my father is seeing seems to be a specialist in Parkinson’s and vascular and dementia issues with no specific mention of MND.

              However the community people/ his GP have given my parents highlighted summaries of the discharge notes and so on to pass onto him. So they will be asking for his opinion on MND symptoms. (How could he possibly rule it out??).

              His GP does seem to be taking a keener interest now. Thanks again for all of your precious time and advice. Off now to look at lightweight wheelchairs for him.

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                #22
                https://www.lightweight-wheelchairs....gaAphAEALw_wcB

                There's a thread about light weight wheelchairs....this was a recommendation👍🏻
                John_1971
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                  #23
                  Unfortunately the NHS bounced my Dad so that he arrived for his appointment a few weeks back only to be told he was seeing a stroke specialist instead of the neurologist. A complete waste of everyone’s time and the GP is furious.

                  Poor old Dad. He really would like to know the root cause of his ailments - it is incredibly frustrating for him and dominates his thoughts and conversations.

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                    #24
                    Oh John that is awful. Then he should be fast tracked meaning seen within 2 weeks. Did the g.p refer? It certainly does dominate our lives for sure.
                    Diagnosed May 2021 bulbar onset als.

                    Comment


                      #25
                      Originally posted by John_1971 View Post
                      A complete waste of everyone’s time and the GP is furious.
                      Do you know who decided to change your father's appointment - it had to have been a clinical decision.

                      Hopefully there is a new plan in place now but frustrating is probably an understatement to describe your dad's (and your) mindset... xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #26
                        We don’t know who made the call to palm it off - let’s be honest, it was very likely to have been the neurologist. Anyway, my Dad and Mum and Sister turned up at the appointed time, opened the door and it was… someone else.

                        The GP was livid. Dad is now under the senior partner who actually came and saw him (that says a lot right) at home and was at pains to express her dismay.

                        The stroke specialist on the day was also keen to make the case for him to see a neurologist writing a report pointing out his issues.

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                          #27
                          Originally posted by shelly21 View Post
                          Oh John that is awful. Then he should be fast tracked meaning seen within 2 weeks. Did the g.p refer? It certainly does dominate our lives for sure.
                          Ah - I guess the nitty gritty is what triggers the fast track Shelly? I had the words “Motor Neurone disease” whispered in my ear at A&E. We just have clinical descriptions of symptoms bouncing around, even the exasperated report by the stroke specialist did not refer to any specific disease.

                          Even a provisional diagnosis of MND will be a big step forward. Could a GP do that ?

                          Comment


                            #28
                            Originally posted by Ellie View Post
                            Do you know who decided to change your father's appointment - it had to have been a clinical decision.

                            Hopefully there is a new plan in place now but frustrating is probably an understatement to describe your dad's (and your) mindset... xx
                            Thank you Ellie. X

                            We will not give up his need for a diagnosis.

                            Comment


                              #29
                              Originally posted by John_1971 View Post
                              Even a provisional diagnosis of MND will be a big step forward. Could a GP do that ?
                              Not really John - they can 'strongly suspect' an MND etc. but, because it's such a difficult and serious diagnosis to make and to get, so the full diagnosis isn't made without testing. xx
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              Comment


                                #30
                                Originally posted by Ellie View Post
                                Not really John - they can 'strongly suspect' an MND etc. but, because it's such a difficult and serious diagnosis to make and to get, so the full diagnosis isn't made without testing. xx
                                Ok - thanks.

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