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Thread: Hi from Allan Y

  1. #1
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    Hi from Allan Y

    This is my first post !
    I am dealing with the symptoms and being treated for MND without as yet having the diagnosis confirmed. I first noticed the problems starting 18months ago. My mouth seemed to default open and i starting drooling and i found it hard to pronounce certain words and was finding it difficult to get my words out. My handwriting (which was never great) is rapidly becoming illegible. I tend to stumble quite a lot and my hands shake if i try to lift even a cup of tea.

    My EMG tests showed border line for MND and iam now getting very frustrated.

    Has anyone else been waiting this long to find out?

  2. #2
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    Hi Allan,
    So sorry to hear what you are going through, I was pushed from pillar to post for 2 years. before I had to go privately to see a neurologist. and he said I had Bulbar palsy, I was seeing ENT specialists every 3 months having cameras put up my nose and down my throat and they said it was due to stress. but now I have to use a lightwriter because I can`t make myself understood. I fully understand your frustration,
    it takes a long while to find out.
    kind regards,
    Katie

  3. #3
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    2 yrs Katie !

    Iv seen an ENT Consultant who advised me my swallow problems are probably being caused by reflux!

    I am under Prof Shaw at Sheffield and see her again the end of next month.

    Allan

  4. #4
    Forum Member pete's Avatar
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    Hi Allan ,

    Welcome to the forum, and Katie is spot on ,I was around that time , it's only because still not a lot known about MND in general ,so. It's a pro cess of ruling other conditions out , so they are confident when they break the news to you they are more than certain that's what you are suffering from, take care and ask away when your ready.

    Regards
    Pete
    All I need is a miracle

  5. #5
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    Hi Alan
    I think you will find most people will find they were hanging around waiting for a diagnosis, my mum's "suspected" diagnosis came about 8 months before they confirmed it. Even more than a year before the suspected diagnosis they were saing she was suffering from dysphasia and had to learn how to speak properly and swallow. she had a partial lung removal for suspected lung cancer (non confirmed) and they kept thinking it was as a result of that operation.

    there a diagnositc criteria for MND and unless so much of it is met then i guess someone would get a diagnosis of definite mnd, probable mnd (all legitimate diagnostic). El Escorial Criteria.

    take care- and one of the most important things is ensuring that you get the right access to care/ support

    lucy

  6. #6
    Forum Member Northern star's Avatar
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    Hello
    I started to experience a difficulty in speaking in early 2011 I eventually got the GP in August but did not get a diagnosis until August 2012 .... It is a long process especially if borderline . If you are under Prof Shaw you are in good hands ... I tried to look at the time until my diagnosis as positive but it is gruelling time .... Sorry to hear you are finding these symptoms difficult .... Hope you get some resolution soon ... Keep in touch

  7. #7
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    Hi Allan, my Dad had a 7 year wait from the onset of his symptoms and numerous tests to the MND diagnosis.

    When did you start having tests?

    Lola

  8. #8
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    Hi my husband had a quick diagnosis only a couple of months. But seems to be going down hill fast well to me he is. He is unfortunate to no longer be able to take the relitek as this gave him pancreititus and pneumonia only 4 people in the UK so they say. How unlucky in life can one person be.

  9. #9
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    Hi Jennette,my husband is still taking rilutek he suffered recurring bouts of pancreatitis until he had a billary stent put in.He was only in hospital a couple of days following this but touch wood he hasnt had pancreatitis in over 18 months following the stent and is still able to take his pill x

  10. #10
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    Hi Lola

    Had my first emg test in May 2011 and the last in Sept 2012. It showed abnormalities but not sufficient to confirm MND. Still stumbling with my left leg,choking and coughing and struggle to get some words out especialy when tired. I attend a local MND meeting every two months and have seen how fast people can deteriate so I feel fortunate that my symptoms have remained fairly static.

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