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    #16
    Originally posted by matthew55 View Post
    Off topic I know but I was kind of hoping that this forum would be my monument after I go. 🤨
    You'd have thunk so, but don't bet on it.

    65% of my posts were deleted by higher powers with a few mouse clicks - that was thousands of my posts, which took thousands of my eye movements and thousands of hours of my precious time to type. And it affected many, many forum members and old threads which had no activity for a set period of time. Worse though, many members who are sadly no longer with us, so had not logged on for some time, were also systematically deleted - all trace of them is gone forever 😪
    ​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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      #17
      In the age of the cloud that is despicable and backs up my thought that whoever runs this forum doesn't understand or care about us. 😠

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        #18
        Thanks for that clear explanation Ellie. Disgraceful and unthinking that they deleted all those posts, especially when they would have consumed very little storage space being largely text. I use the search facility before asking questions in case they've been asked before.
        Each day is made easier with a bit of humour.

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          #19
          Thank you for the explanation about lower and upper motor neurones Ellie. I was trying to put into words how my neurologist explained this to me but you are much clearer than I could have been.

          I used to find reading old threads very useful and informative so its such a shame they were deleted. As you say its really sad that we can't read comments from departed friends.

          Love Debbie x

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            #20
            Hi Sue, I have Inclusion Body Myositis (IBM) and Admin have allowed me to gate crash this brilliant forum. The symptoms are very similar to MND and indeed I had a recent F2F with my local MND nurse who recommended me looking at the MND site to get practical ideas on coping strategies. IBM is very rare, difficult to diagnose and has no medical treatment. My diagnosis took over 10 years during which time I put up with countless falls, serious swallowing difficulties and a slow loss of most skeletal muscle strength. I was eventually diagnosed by a rheumatologist following a couple of muscle biopsies.
            The MDUK and Myositis UK websites are worth a look, we also have a 'mutual support group' through the Myositis Friends Support Network, who have a website. One of the more recent victims to IBM is the musician Peter Frampton. Hope this helps. Chris

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              #21
              Chris thanks for that, I have been on the various web sites but non are as forthcoming as the MND site which has plenty of info.I will check the Friends support group out,

              Could I ask you if anyone mentioned taking Statins to you? Did you actually take Statins? It was said by the consultant the other day and I've since seen something on the web saying Statins can cause this damage to the muscle. She didn't tell him to stop taking them as she needs to speak to someone else, hes been on them for about 5 years I reckon.

              This is a lift from the web

              "For some patients, statins cause necrotizing myopathy, a form of the rare idiopathic inflammatory myopathy, also known as myositis. Myositis is a chronic, debilitating condition that includes dermatomyositis, polymyositis, inclusion-body myositis, and juvenile forms of the disease"

              FGS this may have been caused by prescribing them to him -

              Chris do you take steriods - that was mentioned?

              Thanks for your help

              Sue

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                #22
                Sue, I don't take any medication. I was put on steroids for a trial month after my first biopsy showed evidence of myositis, but without any conclusive reaction. My consultant is Dr Hammans at the neuro-muscular dept at Southampton General. I am not qualified to comment regarding statins, I have never used them. The Myositis Friends Support group are very helpful, with a lot of experience. They are a private, closed FB group, why not asked to join based on your husband's symptoms of possible myositis. Try the FB link on their website. http://myositisfriendssupportnetwork.uk/
                Maybe see you there. Chris

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                  #23
                  Suefromwakey It's unthinkable really that statins could be responsible for your husband's possible Myositis. There are several published papers on the link between the two.

                  If only you could get a definite diagnosis...

                  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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                    #24
                    again we have been left in limbo.................more than 20 months with a "Probably MND" and now this "Might be Myositis".................husband has not even seen a GP in the last two years..............so I have taken the old Bull as it were and asked that a GP visit him, what he got was a phone call ! anyhow he advised him to stop the Statins and await the Consultants review but that will be another 2 months away,

                    It didn't seem right to continue with the Statins - they might be to blame - trouble with these phone consultations is no one actually gets to see what a state he's in, DR didn't even ask how he manages day to day........er by me 100%.......the nightmare continues

                    Sue

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                      #25
                      Sue, is the Consultant's review an in-person appointment, and any idea if the Consultant is an MND Specialist, Neuromuscular Specialist or General Neurologist?

                      Sorry you're both still in Limboland 😕

                      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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                        #26
                        She is a Consultant Neurologist and promised a face to face, to be honest I don't know difference between the professions

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                          #27
                          Google her, Sue, her area/s of expertise will be listed. Ideally, at this stage your husband shouldn't really be under a 'General' Neurologist, but under a Neurologist with a special interest/experience in Neuromuscular Disorders and/or Motor Neurone Diseases. Best practice is that his case, being undiagnosed and progressive, should be discussed at the Neurology Dept's regular case reviews.

                          I know that Covid might interfere with 'best practice', and just hope things improve for you both.
                          ​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
                            Yes Ellie she comes up as specialising in "Neurology" makes no mention of special experiences etc, she did say she would be speaking to someone "Higher" so that will be the meeting you mention - she hoped it would be December

                            just want to put a rocket up

                            Thanks

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                              #29
                              Originally posted by Suefromwakey View Post
                              just want to put a rocket up
                              I'll supply the rocket fuel 🚀 😁
                              ​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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                                #30
                                I dont know if im hoping for it to be one thing or the other. Im just hoping whatever it is it can be treated and that they'd hurry up. Not a lot to ask for. 😩

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