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Thread: Not diagnosed but concerned

  1. #41
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    Look mnd is terrifying and it sets us into panic mode people prob won't believe this but I was actually a sane person a year ago now unregonisable it doesn't help when there isn't anything that can actually say yes u def have it without tests other tests and uncertainty I don't no what chronic neuro changes mean my neurologist said its clinical talk but to me as a lay person I don't understand I do feel for u though time is on your side best to have a good holiday and try and forget counselling def does take the edge off

  2. #42
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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

  3. #43
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    Totally agree it has been the worst year in my life affected everything I understand how u r the way u r I was a laid back person enjoying life now I am a fearful anxious someone I don't recognise good luck

  4. #44
    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.

  5. #45
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    I do not want to offend anybody at all and am waiting on a referral to a Neurologist in London now -my post today was in relation to if I could walk 6 miles after 2 and a half years of symptoms would I be able to after that timescale if MND -Many apologies if I have offended anyone I didn't mean too.

  6. #46
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    Hi dia, first of all I understand your message and where u r coming from, me personally I was told by one neurologist who doesnt explain much and has no suggestions I saw one other fir a 2nd opinion and did reflexes with them I am to go bk as my hand no better on both emg that muscle in hand has come up abnormal and no idea what to do next I find this forum helpful my hand seems to get worse with no suggestions I replied to Andy as can u detstand his anxiety but understand exactly what u r saying and I apolgise for any offence my brother had mnd and its hortible apologies again.

  7. #47
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    Sorry dina predictor text I cannot use my hand to write either v frustrating so can only imagine how u feel

  8. #48
    AndyM and Skyvano

    If you intend to continue to use this forum, which is devoted to a disease that neither of you seem to have, would you please communicate with each other by private message.

    Many thanks.

    Doug

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