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Thread: National Neurological Hospital Visit

  1. #11
    Forum Member nunhead_man's Avatar
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    Hi Andy

    I guess you do have to believe him - I certainly have no other options than to believe what they say and comments from other people who look at my hand damage for example, and say that I have a typical shape connected with arm onset.

    Perhaps for your information, the weight loss thing is about one of the symptoms of motor neurone disease is an increase in metabolism, perhaps linked to the motor neurones thumping around - fasciculations take energy et cetera et cetera.

    Presumably, hence his comment that if you get MND you should lose weight.

    Does not work in my case because I was very active before I got MND and now less active, but have not adjusted my diet properly. So, in fact, I put on weight since I have had it rather than lost it, which certainly confuses my neurologists
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  2. #12
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    Hi Andy ,

    Do find it hard to believe him but now seen 5 Neurologists and all said not MND and Clinical Exams have been fine , the guy said last week that he rarely put down on his report Normal Clinical Examination - I asked him about having an EMG done and he said there was no need and he could tell by his Examination that no sign of any Neurological disease!!

    Do you mind me asking what you mean by typical shape connected with arm onset , reason I ask is because I am convinced my arms /hands have also shrunk /changed shape also wrists have got thinner too but when I showed Neurologist this last week he said he couldn't see any problem and said I had full power in my arms /hands.

    Interesting regarding weight because in the first 7 months from start of symptoms I lost 3st in weight but to be truthful I wasn't eating well as was so stressed at worrying why I didn't feel right or well, from then on though I have piled the pounds on and am actually 2 stone heavier than when this started so a 5 stone swing !! speaking to MND association they said it was unheard of to put that much weight back on -I am still exercising as much as possible and today for example walked 3.5 miles which again I was told if could walk two miles plus after nearly 3 years of symptoms that would be unheard of too.

    I have to believe what the Neuros say but still struggle to get my head round it .

    Thank you again for your post and I wish you all the best fighting this awful illness.

    Best

    Andy

  3. #13
    Forum Member nunhead_man's Avatar
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    Hi Andy

    Thank you for your good wishes

    Quote Originally Posted by AndyM View Post
    Do you mind me asking what you mean by typical shape connected with arm onset
    Err - picture tells a thousand words, and all that stuff

    There is a picture in this article, which may help your understanding?

    https://onlinelibrary.wiley.com/doi/....1002/jgf2.213

    Or this?

    https://www.researchgate.net/figure/..._fig1_51815003

    I guess I remain cheerful because I have support and a clear diagnosis - I can only wish that you get satisfaction for yours
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  4. #14
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    Thank you for replying Andy -although I feel like have lost muscle mass on hands they do not look like anything in the photos on thes articles ,I will have to accept what has been said and battle on but still haven't got the clear full explanation as to what is happening to me.

    I thank you again.

    Best

    Andy

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