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Thread: Not diagnosed but concerned

  1. #31
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    I have to go for a nap now Andy you have worn me out

  2. #32
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    Sorry Jon -speak soon

  3. #33
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    Ok so I haven't posted in a fair while but symptoms are continuing namely the all over Fasiculations and I am convinced still losing muscle mass especially on arms and legs as well as hands and feet but no one else can see it -I have just been for a 6 mile walk which took just over 2 hours -would I still be able to do this if two and a half years into this and from when symptoms first started -I am going off my head with this but my Wife says it wouldn't be possible to walk this far 2.5 years after first symptom -thoughts please and apologies if my post annoys anyone as its not my intention

  4. #34
    Forum Member Ellie's Avatar
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    Hi Andy,

    At least 4 Neurologists have examined you and told you that you do not have ALS/MND.

    You have had multiple EMGs, none of which showed problems suggestive of ALS/MND.

    You said yourself you are "convinced" you have it, so really at this stage I don't see how I, nor anyone else except a psychologist, could possibly compete with your deeply held conviction ...

    Best wishes.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #35
    Forum Member Terry's Avatar
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    Hi Andy ;

    Your wife is right, if you have limb onset ALS you would not be walking much at all.

    I have a slow type of Mnd and I couldn't walk unaided after two years.

    Mnd has many symptoms that are also prevelent in other decreases and problems like vitamin deficiencies etc.

    Please take notice of Elle's comments, she is very knowledgeable, unlike me.

    Love Terry

  6. #36
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    I have had muscle loss confirmed in left calf by 4th Neurologist and like yourself on my 2nd EMG it also showed Chronic neurogenic changes in the area when I have lost muscle but I first noticed was smaller in July 2017 nearly two years ago and having walked 6 miles today I wanted to know what peoples thoughts were after having symptoms for 2.5 years in total could I walk that kind of distance if had MND and the timescale -I seem to go round and round in circles -I have also bodywide twitching which started in April 2017 -I keep trying to tell myself that the timescale is on my side but I am not convinced -the last Neurologist I saw said that after 2 and half years if MND something would have failed by now!

  7. #37
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    Thank you Terry -this all started with pain in lower back around Xmas 2016 -the twitching started in April 2017 and my legs feel weaker but as my wife says 2 and half years and still able to walk 6 miles wouldn't be possible even with slow onset surely .

  8. #38
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    Ellie -thank you again for your words -I so want to be convinced but question how can I walk 6 miles two and half years after 1st symptom and still think its MND -my Neurologist said that after this period of time something would have failed by now -I so want to believe him but still concerned but do think timescale on my side,

    Thank you again for your words

    Andy x

  9. #39
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    I was a Support worker for men with Autism -loved my job , lived life to the full that all changed Xmas 2016 -I have never been an anxious person but am now and when I asked Neurologist what Chronic Neurogenic Changes means was told similar and nothing to worry about -I hang onto the timescale as the only positive to be truthful -Keep on battling all we can do isn't it but not having clear answers just adds to the anxiety and fear

  10. #40
    Forum Member Gillette's Avatar
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    As I understand it, Andy M and Skyvano, you have each been told that you do not have ALS/MND. I think you should each be thankful for that and cross ALS/MND off your respective lists of possible conditions.

    For each of you, MND has been discounted by numerous neurologists, therefore you would be better served completely forgetting about MND and, instead, start considering which other conditions you may have and finding out about them. I'm sure there are plenty to choose from. They may not all have a forum where sufferers can link up with other sufferers, but it obviously isn't helping either of you being on this forum.

    I understand that each of you is anxious about what is happening to you, but concentrating and fixating on a condition that you have been told you do not have is not helping you. Nor is it helping other members of this forum who do have, or are affected by, MND.

    I apologise if I appear to be or am being rude, but, along with many others on this forum, I am trying to cope with the increasing restrictions that MND is bringing into my life, including the likelihood that I will not be able to hold my granddaughter after she is born in the next few weeks.

    ADMIN, please feel free to delete this post if I have over-stepped the mark.
    Dina

    Trying to keep positive, but not always managing.

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