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Thread: Hi Samkl

  1. #1
    Forum Member Terry's Avatar
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    Hi Samkl

    Hi Samkl and welcome to the forum;

    Samkl wrote:-

    "I've been reading this forum for a few weeks while we wait to see whether my brother has MND or not, and I can assure you there is a wealth of knowledge and support here, so the one thing I can assure you of is you aren't alone. I don't have much knowledge or experience, but with the little reading I have done, your husband's path to diagnosis isn't common."

    Sorry to hear about your brother and maybe you can tell us a little more about his symptoms and any problems he has.

    Please feel free to ask any questions or just share things with us.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  2. #2
    Forum Member Gillette's Avatar
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    Hi again Samkl,

    I hope your brother hears a diagnosis soon, and I fervently hope that he doesn't have MND.
    Dina

    Trying to keep positive, but not always managing.

  3. #3
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    Hi Terry and Gillette,

    Thank you for your good wishes. They are really appreciated. My brother was diagnosed about 6 weeks ago, but investigations are ongoing. I gather this is par for the course as diagnosis can take a long time, given it's often a process of elimination. I think he is very fortunate (if you can use the word "fortunate" in any thing to do with MND) to be under the MND team he has. If only that was all it took.......

    I wish both of you and Serenity, and indeed every one on this forum the very best. I've been truly humbled by the strength, generosity of spirit and humanity I've witnessed in my reading through many threads over the last few weeks.

    S x

  4. #4
    Forum Member Terry's Avatar
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    Hi Samkl,

    Sorry to hear that your brother has been diagnosed, I was hoping that just maybe it could be something else when reading your earlier post.

    Pleased to hear that he has a good team around him.

    Love Terry

  5. #5
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    Hi Terry,

    He was diagnosed by a neurologist, but has since been handed on to the MND team which is headed by a Professor. Whether that's either here nor there, I don't know. The professor is expressing some doubts. I'm not superstitious, but I feel I don't want my thoughts to land too heavily on anything at the moment, for fear of jinxing what small hope we have. How ridiculous is that ! What is, is ! We just aren't absolutely sure.

    S x

  6. #6
    Forum Member Terry's Avatar
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    Hi Samkl;

    What was his first problem and how long ago?

    How have things progressed from there?

    What tests has he had?

    They don't normally diagnose Mnd without being pretty sure but.

    Love Terry

  7. #7
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    Hi Terry,

    Weight loss, then fasciculations (all over), then shortness of breath (in that order, I think). The weight loss followed 2 very nasty episodes of food poisoning overseas, the 2nd one of which bought on an acute case of diverticulitis. He's had an MRI and EMG with the first neurologist. The second neurologist has ordered a massive lot of blood tests and has done a lot of pin pricking, physical tests etc (again, I think. I wasn't there).
    You know its a rotten disease when you catch yourself thinking "wouldn't it be great if it was MS"!

    S x

  8. #8
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    Sorry, should mention the weight loss roughly started with the first lost of food poisoning (April) , I think or maybe earlier in the year.

  9. #9
    Forum Member Ellie's Avatar
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    Welcome to the Forum, Sam.

    Sorry about your brother's diagnosis, albeit it an unclear one - if it were unequivical, at least you can start dealing with the fallout of an MND diagnosis. It's 'good' that the MND Prof is expressing some doubt - as Terry said, it's not a diagnosis that's given lightly, so if it turns out to confirm the MND diagnosis, there won't be any second guessing, so to speak.

    Any idea how his clinical exam went? And the EMG - the new Neuro doesn't see a need for that to be repeated?

    All the best to you and your brother.

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

  10. #10
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    My turn to welcome you samkl. Sending hugs to you and your brother...you are in my thoughts.

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