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Thread: Question following MND Conference

  1. #1

    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. #2
    Forum Member
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    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

  3. #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

  4. #4
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    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.

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

    No

  6. #6
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    Pls

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

    Jo

  8. #8
    Maverick
    Guest
    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

  9. #9
    Forum Administrator Admin_MND's Avatar
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    Oct 2015
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    75
    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/

  10. #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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