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Thread: Length of time to specific MND diagnosis?

  1. #1
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    Length of time to specific MND diagnosis?

    Hi all

    My father has been diagnosed with probable MND - I am aware everyone is different and MND is different for each person but wondering if you can share roughly how long it was until your neurologist confirmed the type of MND? Or do they always mean ALS if they say MND?

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    Forum Member Lynne K's Avatar
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    Vicky, My neurologist Amina Chaouch was very reluctant to state the type of MND I had until I pressed her. Then she said ALS. This was after a brain MRI and 3 lots of muscle and nerve conduction tests. This all took about 9 months to a year. Even if diagnosed with a slow type of MND the speed of deterioration can speed up. My ALS is slower than some but Dr Chaouch said that it could speed up. Lynne
    Last edited by Lynne K; 2nd June 2019 at 00:06.
    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.

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    Forum Member Gillette's Avatar
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    Hi Vicky,

    My consultant at Salford Royal was pretty certain mine was ALS when he gave me the diagnosis, which was possible MND. Even though it has proceeded fairly quickly, according to the El Escorial Criteria, I am still 'possible' as opposed to 'probable' or 'definite'. I think that shows how difficult it is to give accurate ideas about the disease.
    Dina


    Trying to keep positive, but not always managing.

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    Forum Member AndyB's Avatar
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    Hi Vicky

    I was originally given a ‘probable MND’ diagnosis. I think it was around 6 months before it was confirmed as MND/ALS. I was claiming against a critical illness insurance policy and they wouldn’t pay out until it was confirmed.

    Andy
    Sporadic MND/ALS - Limb onset - Diagnosed May 2016

    Today is the tomorrow I feared yesterday

  5. #5
    Forum Member Ellie's Avatar
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    Hi Vicky,

    Quote Originally Posted by Vicky86 View Post

    My father has been diagnosed with probable MND
    "Probable" in a given diagnosis of ALS means your dad was found to have upper and lower motor neuron signs (UMN & LMN) in two spinal cord levels or in one level combined with two areas of LMN involement identified on an EMG.

    A diagnosis of ALS has to satisfy the El Escorial diagnostic criteria - it's basically a pathway to diagnosis if a person has certain LMN, UMN clinical findings & EMG results.

    Quote Originally Posted by Vicky86 View Post
    I am aware everyone is different and MND is different for each person but wondering if you can share roughly how long it was until your neurologist confirmed the type of MND?
    In my case, I was told at diagnosis that I had ALS. My diagnosis took 10 weeks from first seeing the Neurologist and I was told it was a possibility from around week 6 of the diagnosis process, which then my EMG results showed there were no other possible contenders and my ALS diagnosis was confirmed.

    Quote Originally Posted by Vicky86 View Post
    do they always mean ALS if they say MND?
    No, it could be that a person has other forms of disease, PLS, PMA, PBP, but ALS is by far the most common form of MND. Or, perhaps it may be more correct to say that to have both LMN and UMN involvement (damage) AND to have clinical progression is by far the most common form of ALS or MND, in which case the terms are interchangeable...

    It is important to know which type or subset the diagnosed person is as it can make all the difference in planning, as well as knowing how one's body may be affected.

    Take care,

    Love Ellie.
    Last edited by Ellie; 2nd June 2019 at 15:49.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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    Our local neurologist didn't know what my husband had. EMG and electrical conduction tests didn't identify MND/ALS. He was treated for multi focal motor neuropathy and steroids but neither worked. We then went to the National Neurological hospital in London - our local neuro referred us (it was free) and on the day Dr Sharma diagnosed MND - it was a shock but clearly this is what my husband has. Husband was diagnosed in October 2017 - he was still walking but arms weren't really working and he was getting gradually worse. The following February I gave up work as he clearly couldn't manage without help. He started with fasciculations in the summer of 2015 (I think) then his shoulder stopped working in latter part of 2016. He needed hoisting from October 2018 and is now paralysed in his limbs. He can still eat and drink and talk fairly OK. He is still enjoying life - although obviously not a life he had planned on having. Take care - it is a rubbish disease but we have to deal with it xx

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    The uncertainties continue! You strike me as such a stoic amazing lady Lynn - good on you ����

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    It really does thank you for sharing x

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    Thank you Ellie this is helpful I understand more now how the diagnosis is approached.

    I see you have been battling this for a very long time - good on you and you seem to be doing very well with the technology as your writing on here is so good!

    Take care xx

  10. #10
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    It only took me a few days because I went self funded private
    - but I did get a second opinion from Ashwin Pinto.

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