View Poll Results: Did anywone had symptoms for more than 3 years before getting diagnosis

Voters
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  • Yes, it took more than 3 years (had numerous testing while waiting)

    3 8.33%
  • No, it hasnít been that long

    31 86.11%
  • Yes, it took more than 3 years, but didnít see a specialist until the diagnosis process started

    2 5.56%
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Thread: From onset to diagnosis?

  1. #51
    Forum Member Barry52's Avatar
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    Hi Jo,

    Apparently they are going to video it to use in further training. I’m not sure how it will come across as I plan to use my speech app which has my prepared talk on it. I hope my voice is understandable when it comes to question time. I will ask for a copy of the video.

    Barry x
    Iím going to do this even if it kills me!

  2. #52
    Forum Member Lynne K's Avatar
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    Sounds like you were very luck lucky having your GP Namay. Mine has now learned more about MND even though he had a vague idea about neurological symptoms already. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #53
    Forum Member Ellie's Avatar
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    Are you speaking on the subject of ADRT Barry?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #54
    Forum Member Barry52's Avatar
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    Yes Ellie but I will take the opportunity to stress how important it is for health professionals to broaden their knowledge of MND so that communication can be improved as well as care post diagnosis.

    Love Barry
    Iím going to do this even if it kills me!

  5. #55
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    Good Luck on Wednesday Barry. We will be rooting for you.

    It is great that you're working hard to get our message across and it must be difficult to not get emotional.

    Thank you ,
    Love Debbie

  6. #56
    Forum Member Barry52's Avatar
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    Hi everyone,

    My talk about advanced decision to refuse treatment was well received today. There were 80 health professionals attending and I took the opportunity to include life with MND in my story, using this platform to stress how little is known about the disease and the delays in providing equipment to enhance the quality of life. I also took several questions using a microphone and my croaky voice.

    A document called RESPECT (recommend summary plan for emergency care and treatment) is to be rolled out next year. Not all regions of England and Wales will adopt it as some will continue with ADRT. In my opinion RESPECT is better and simpler to complete as it is only 2 sides of A4.

    The focus group wants to use my experience in their training video so I have agreed to provide some photos of fundraising events and my life post diagnosis.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  7. #57
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    Difficult to say exactly when the symptoms for me started. But...I was officially diagnosed on 3rd October 2018. Now on reflection, I can recall having really bad leg cramps, and I mean awful ones in my thighs and calves during the night which I'm sure go back as far 2014. These nearly always occurred either after having walked a couple of miles, or when doing a lot of bending and crouching down during my jobs as a Locksmith. Even at that time 4 years ago I used to get some weird muscle twitching in my thighs but never saw it as anything serious. I also used to get cramps in my neck, back and ribs which were quite unpleasant. The leg cramps seemed to get more regular, severe and last longer in bed at night, over the last year or so. But it wasn't really until about May this year I knew something might be seriously wrong with me when I started to get extremely tired and breathless just going for a gentle stroll. So I might estimate that this MND I have was starting to progress maybe 4 years ago.

  8. #58
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    Apologies if I put this post in the wrong section...
    Last edited by Stevo; 11th October 2018 at 00:57. Reason: spelling error

  9. #59
    Forum Member Lynne K's Avatar
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    Similar story here Steve about symptoms that you didn't know the cause of four years before diagnosis. But for me it was gradually loosing my ballance. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  10. #60
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    My first noticeable symptom was slurred speech and it was about 5 months from onset to diagnosis.

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