Viewing 11 posts - 1 through 11 (of 11 total)
  • #175564
    Diagnosis

    Hello My name is Daniel, to date I have seen my GP four times and now Iam waiting to hear back from the top Nurologist specialising in neuromuscular diseases.
    I know the process of diagnosis can take a long time, but how long really?
    Iam interested to hear other people’s diagnosis journey for their form of MD or myapothy from onset of symptoms to actual diagnosis please.
    If you could be bothered I’d be grateful, thanks a bunch.
    Daniel :yes:

    djt91184
    Participant
    Posts: 0
    Joined: 02/01/2019
    #175565
    Reply To: Diagnosis

    “Top Nurologist in my area” it should read :P

    djt91184
    Participant
    Posts: 0
    Joined: 02/01/2019
    #175567
    Reply To: Diagnosis

    This is a very difficult one to answer. It depends on somkNy things. In my case, I only got a genetic diagnosis aged 38 but I had been given a broader diagnosis of CMD aged 5. The reason for such a gap was simply medical advancement. The mutation had only very recently been discovered for my particular type of MD. New genetic mutations are found and testing techniques invented all the time. We are in exciting times so I hope you don’t have long to wait for diagnosis.

    Often, a specialist neurologist will have a hunch based on presenting symptoms and history, giving you a clinical diagnosis so this is a common starting point to look for the proof. It sounds like you are in a good place. Hope you get some answers, sorry we cannot give you an idea of timescale.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #175569
    Reply To: Diagnosis

    Hi sar78 thanks for the reply! :ty:

    djt91184
    Participant
    Posts: 0
    Joined: 02/01/2019
    #175572
    Reply To: Diagnosis

    Hi Daniel,I was diagnosed with opmd last year, I’m in my mid fifties and there is also a family history of this, from the time I was referred to the neurologist to the diagnosis was roughly 4 months hope you find this helpful , wishing you all the best

    Crazy cat
    Participant
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    Joined: 27/01/2019
    #175573
    Reply To: Diagnosis

    Ok yes thanks crazy cat, Iam hoping to hear back from the Nurologist tomorrow :wave:

    djt91184
    Participant
    Posts: 0
    Joined: 02/01/2019
    #175575
    Reply To: Diagnosis

    Hello Daniel. I was diagnosed when I was around fifty, some 16 years ago. I was only diagnosed after my number two son was, and the genetics took around three months to come back. It would be interesting to hear how you got on withthe neurologist, do please let us know.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #175577
    Reply To: Diagnosis

    Thanks embayweather for posting! I will definitely post when my situation becomes more clear :P

    djt91184
    Participant
    Posts: 0
    Joined: 02/01/2019
    #175811
    Reply To: Diagnosis

    The saga continues.
    I just saw the main MD specialist in my area today and he agrees MD diagnosis is very likely…aproxx 6 week wait to do the EMG test then possible biopsy then genetic.
    But at least I feel ham heading in the right direction for some clarity about my physical self.
    :P

    djt91184
    Participant
    Posts: 0
    Joined: 02/01/2019
    #176641
    Reply To: Diagnosis

    It really depends on the complexity of your case! I’ve been under investigation under a Specialist Neuromuscular Consultant for the last 20 years and still never had a confirmed diagnosis and that’s with biopsies, EMG’s, MRI’s, countless bloods and pretty much everything else in between. They know there’s a problem in my case, but as of yet I just have a generic label of “Metabolic Myopathy”. But I’ve met some people that have been pretty straight forward to diagnose it would seem – or in my case it can take forever. There’s not really a measure of time or simplicity. Depends what condition you have and how advanced medical science is at identifying the issues surrounding that condition.

    Good luck with your tests and results! :P

    J4KANOR1
    Participant
    Posts: 0
    Joined: 28/03/2019
    #176672
    Reply To: Diagnosis

    Yep agree J4KANORI with your post completely, thanks :Post:

    djt91184
    Participant
    Posts: 0
    Joined: 02/01/2019
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