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    Question following MND Conference

    Hi, I just wanted a bit more confirmation on what Professor Turner said yesterday about the rate of progression of the disease in different people. He was talking about people having their own 'architecture' in terms of how they are wired and how the disease affects them and how fast it progresses. I found it interesting that he said that it's important for people diagnosed with a slow progressing type that they are told that 'it will stay that way and not speed up'. Is this found to be the case? I was worried that as I've had PMA already 5 years but only now just diagnosed, that everything will now happen really quickly? Can anybody comment on what the Prof said? I'm seeing Prof McDermott next week so will also ask him but just want to see what your experience has shown you?

    #2
    Hello
    I was diagnosed in April 2017. I could walk and use my left hand. Now I am confided to a wheelchair, my left hand is not functioning and I have lost my voice.
    Chris

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      #3
      Hi Chris

      Sorry to hear that you've had that progression over the last year. I hope you have been able to adapt to it and getting enough support. When did you start with symptoms ?

      Jo

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        #4
        I was diagnosed in 2007, two years after first symptom of slurred speech. Progression was slow but with intermittent falls which led me, reluctantly using a rollator. In 2014 I had a serious fall and spent four weeks in hospital with a fractured pelvis. I'm now in a wheelchair outdoors but still manage to shuffle to the loo with my rollator. I was told by Prof Turner after four years that, as my progression had been slow, it was likely to continue.

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          #5
          Hi Miranda, were you diagnosed with PMA or PLS?

          No

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            #6
            Pls

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              #7
              Thanks for that Miranda. Interesting and I hope you continue to be slow to allow you to adapt. All the best.

              Jo

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                #8
                I have PMA, officially diagnosed feb '16, first symptoms started towards the end of '14. Started with foot drop then muscle wastage before starting in other leg which had muscle wastage first then foot drop. I'm still upright with two walking sticks just. I too have been told mine is slow progressing. I don't have any signs in my upper body yet. An EMG in feb'17 apparently showed the start of nerve death in my right hand but still no sign of it and my right hand was very 'tired' from a lifetime of plastering which at the time i thought could possibly be why. I remain positive and continue to be happy but am currently having to tell myself to stop 'looking' for signs up top. I have read of a number of cases where PMA can take years to move from the lower body to the upper body, here's hoping! My mother remarried and 3 months after my official diagnosis my step brother was diagnosed with MND and he passed Nov '17, so whilst being unlucky we are also lucky. Mark

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                  #9
                  Hi Cruisegurl,

                  Apologies for the delay in getting back to you on this. We asked our research team to provide us with some feedback for you:

                  PMA usually progresses more slowly than other types of MND and life expectancy is usually five years or more. Sometimes, though, people with a diagnosis of PMA will have this changed to ALS as their symptoms become clearer.

                  It is well known that MND affects everyone differently. Not everyone has the same symptoms, they don’t appear in the same order and they progress at different rates. This, I would guess, is what Prof Turner meant by everyone having their own ‘architecture’.

                  With regards to people with a slower progressing form of the disease being told that it will stay that way, research would suggest that this is the case – hence the different life expectancies with different types of MND.

                  As this lady is seeing Prof Turner this week, she will be able to get the most conclusive answer from him. Unfortunately, as she has already had the disease for five years it is possible that her disease will progress quickly from now on. However, it is also possible it won’t. Not helpful, I know, but therein lies the problem with making any kind of predictions with MND


                  I hope this helps somewhat, if you need any more insight or information, please let us know, or check out our research section on our website : https://www.mndassociation.org/research/
                  Our working hours are Monday to Friday 8:30am until 5pm

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                    #10
                    Thank you and I'm sorry to say reading that was not helpful at all. I wasn't expecting to see the life expectancy information without a warning and I hadn't asked that question? All I wanted to know was if it was correct or could be confirmed what Prof Turner had said at the conference about people who have a slow progressing form of MND should be told that it would remain so and not speed up? I have never asked Prof McDermott about life expectancy or read about it out of choice. I recently joined a fabulous group where others with PMA have lived much much longer than 5 years and I've been told I can look forward to many years yet? Although life shortening I get that, I chose not to read about life expectancy and here it is written very clumsily and also an actual statement saying ' 'unfortunately as she ( that's ME! ) has already had the disease 5 years it is possible her disease will progress quickly.' Goodness me how tactless?! Sorry Admin I think this should not have been published in this way on the forum not knowing what I knew or what I had chosen to know at this stage. Your information sheets online warn not to read on if you dont want to know about life expectancy? My question could have been answered without putting this information in I'm sure?

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                      #11
                      Thanks Mark, sorry to hear about your step brother?What a sad time you and your family are having. Good to hear you are still getting around on your sticks! Excellent! I was on elbow crutches for 2 years and I was quite strong and could walk a few miles a day but because I had to use a PWC at work for health and safety reasons I became weak from lack of use and since June 2017 have used a wheelchair. Upper body not as strong but still able to get out of my chair onto other furniture and use a minibike to exercise my legs. I do between 20 25 miles a week on it. It just really helps me mentally to feel I'm still doing something for myself

                      Keep it up!
                      Jo

                      Comment


                        #12
                        Originally posted by Cruisegurl View Post
                        Thank you and I'm sorry to say reading that was not helpful at all. I wasn't expecting to see the life expectancy information without a warning and I hadn't asked that question? All I wanted to know was if it was correct or could be confirmed what Prof Turner had said at the conference about people who have a slow progressing form of MND should be told that it would remain so and not speed up? I have never asked Prof McDermott about life expectancy or read about it out of choice. I recently joined a fabulous group where others with PMA have lived much much longer than 5 years and I've been told I can look forward to many years yet? Although life shortening I get that, I chose not to read about life expectancy and here it is written very clumsily and also an actual statement saying ' 'unfortunately as she ( that's ME! ) has already had the disease 5 years it is possible her disease will progress quickly.' Goodness me how tactless?! Sorry Admin I think this should not have been published in this way on the forum not knowing what I knew or what I had chosen to know at this stage. Your information sheets online warn not to read on if you dont want to know about life expectancy? My question could have been answered without putting this information in I'm sure?
                        Cruisegirl:
                        Progression differs for each person and takes a different 'shape'. However I have repeatedly head that if slow then expect slow. Some people (admittedly rare) live 10+ years. Some 15+. People with PLS and PMA have a better chance of very slow progression and longevity. Its an inexact science. No neuro can predict but stats show 'if slow to date it is likely to continue'.

                        Charles

                        Comment


                          #13
                          Hi Cruisegirl

                          Prof Turner is my consultant.

                          I can confirm that he feels that, in the main, if progression starts slowly it tends to continue that way.

                          My own case bears that out.

                          As well as the rate of progression being hard to predict, because it varies so much between individuals, the site(s) or routes of progression are equally hard to predict. I have lower limb onset, which is very slowly getting worse. When I saw Prof Turner's colleague, Prof Talbot, on Monday he basically said: We have no idea where it will go next!

                          Until we have a far better understanding of the mechanism of the disease, I'm afraid there is little to be gained in trying to predict individual outcomes from the wider population. Each patient is unique!

                          Doug

                          Comment


                            #14
                            I agree, we were told she had slow progression however it is my opinion it is far from slow given we are less than a year from diagnosis.

                            Comment


                              #15
                              Hello Jaxx

                              Who are you referring to in your post as ' she'?

                              Jo

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