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Thread: MND Variants

  1. #1
    Forum Member ColinF's Avatar
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    MND Variants

    Although interesting and no reflection on MattJ, I found the post on weight loss and MND (hungry, hungry neurons) a little frustrating, let me explain why.

    Since being diagnosed in late 2010 my weight has stayed pretty constant, I've swapped a certain amount of muscle for fat but overall my weight is neutral. In fact inactivity has increased fat around my middle which coupled with a useless left hand has made buttoning trousers quite hard and I've actually been trying to lose weight (it's that or re-new my trouser collection) but I'm certainly not finding it easy. Clearly rapid loss of fat/weight isn't a universal symptom of MND/ALS. For me the questions that follow are how often is it experienced and does it usually combine with any other symptom set?

    It's clear from just a cursory look around that MND is a number (perhaps quite a large number) of different conditions that have a common set of symptoms. Clearly some folks do have rapid weight loss but others don't. I can't help thinking that until the different types of MND are better characterised we're just stumbling in the dark. My impression is that for the most part, clinical trials are carried out on people 'with MND' and seemingly without detailed consideration to variants and whether the drug in question might work with subset of patients. Usually it seems the results are pooled and even a substantial benefit to a small subset has a high chance of being lost in the noise. No doubt the people trying to identify biomarkers are only too aware of this issue.

    I'd love to hear the opinion of the research team at the MNDA.The recent national news coverage of there being many (was it 10?) different genetic variants in breast cancer for me leads the way. Surely we should at least be making detailed records of symptoms and symptom progression in all patients to try to understand common variations to the MND theme, details which could then be worked into genetic or metabolic studies. Without knowing more precisely what we're trying to fix how are we ever going to find a cure?
    Before you criticize somebody, you should walk a mile in their shoes. That way, when you criticize them, you are a mile away from them and you have their shoes....(Jack Handey)

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    Ialso have the same weight issues as you my middle is expanding not a good look on a female.I am putting on loads of weight.

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    Forum Member Robert's Avatar
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    Mine also is an expanding waistline which is probably due to relaxed muscles through minimal use due to immobility. The cases of severe weight lose I've read about are those patients with a peg fitted.

    Regards Bob
    We are the Champions my friends,we'll go on fighting till the end.

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    Forum Member pete's Avatar
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    Hi Bob,

    Think that may be down to lots of maccy ds , and all that relaxing you do these days, How is the view today , Ahh yes the dreaded peg issue , getting closer for me i think but , still putting off ,feel as if i am giving into it ,sounds silly i know but while i can ,I am going to stick with trying to eat as much as possible ,They say Bread is the first thing to cause problems in Bulbar , Wonder how many have found that a problem and when it was found ,the peg a better option, Cannot resign to being fed via a tube just yet, Best wishes to Mc Pat ,

    Cheers

    Pete
    All I need is a miracle

  5. #5
    Forum Member Robert's Avatar
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    Hello Pete,I expect your back home now,it's blowing a hooley down here tonight although the sea is pretty calm.It's coming from the north east bit chilly,debating to go out for a couple of guiness,or a couple of big mac's gotta watch my waistline, here they're looking for a new James Bond. Reminiscing it was a year ago almost since my last big mac eat in,time flies.

    Well Pete our warmest regards to you and the lovely Lynne.X

    Bob & Pretty Pat
    We are the Champions my friends,we'll go on fighting till the end.

  6. #6
    Forum Member pete's Avatar
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    Hi Bob & Pat,

    Yes back in the Midlands, and the view isnt so good now , Made it back to Bristol before i had the urge for a Mc break, found one and well the drive back wasnt so bad , averaged 48mpg so happy with the Kia, Stay well mate and will PM you , Dont want to hijack Colins thread .

    Best wishes to you Both

    Pete & Lynne xx
    All I need is a miracle

  7. #7
    Forum Member pete's Avatar
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    Hi Colin,

    This is an interesting thread , much of what you have said rings very true to me , What amazes me on every visit i have made to the various /Hospitals for appts Nothing has ever been asked regarding Trials or new drugs or anything other than Questions i could have answered over the phone , saving the time and fuel for other uses.

    As for the pages of research on MND, well some are good and quite a lot, lost on me not being medical or a having a PHD in neurology, And reading most pretty much confirm my view that despite all the limited money that goes into research ,still little is known and its going to stay like that for a long time ,Unless we have a massive funding into finding a cure for the Various forms of MND , and i say a cure , not a drug that prolongs it, a cure ?. I guess we are the minority and as such no one fighting our cause who is going to make the Public more aware , isnt it amazing how you get TV ads for every mortal cause exept for making our plight Known .
    All I need is a miracle

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    Hi Pete - I find eating white 'plastic' sliced bread almost impossible - it forms a large lump and gets stuck in the roof of my mouth but toast it and it is OK. Just because a PEG is fitted it doesn't mean you have to be fed through the tube. Mine was fitted about 4 1/2 years ago but I still only eat by mouth (although mainly soft food). My understanding is that it is better to have it done sooner rather later .
    Quote Originally Posted by pete View Post
    Hi Bob,

    Think that may be down to lots of maccy ds , and all that relaxing you do these days, How is the view today , Ahh yes the dreaded peg issue , getting closer for me i think but , still putting off ,feel as if i am giving into it ,sounds silly i know but while i can ,I am going to stick with trying to eat as much as possible ,They say Bread is the first thing to cause problems in Bulbar , Wonder how many have found that a problem and when it was found ,the peg a better option, Cannot resign to being fed via a tube just yet, Best wishes to Mc Pat ,

    Cheers

    Pete

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    Forum Member computatec's Avatar
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    Hello Bob,

    Patients have a feeding tube fited (PEG, RIG) because they are losing weight and unable to take enough by mouth to maintain weight. The PEG does not cause the weight loss. I had a RIG fitted last month and now I am able to supplement what I am able to eat by mouth with special liquid supplement packs.

    Recent detailed research on diet in MND has recently been published in America. The findings are that longevity is dependant on maintaining an adequate weight. Adequate weight has been found to be 15% MORE than the normal calculated weight for a healthy person. Sorry ladies, I am telling it how it is. Another surprise discovery was that a fat rich diet is better than a high carb diet as where you get your calories from matters.

    I will try to get a link to this research so you can all read it. It is quite easy to understand.

    Clive
    Living with MND. There is a solution to every problem - never ever give up.

  10. #10
    Forum Member pete's Avatar
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    Quote Originally Posted by miranda View Post
    Hi Pete - I find eating white 'plastic' sliced bread almost impossible - it forms a large lump and gets stuck in the roof of my mouth but toast it and it is OK. Just because a PEG is fitted it doesn't mean you have to be fed through the tube. Mine was fitted about 4 1/2 years ago but I still only eat by mouth (although mainly soft food). My understanding is that it is better to have it done sooner rather later .
    Hi miranda,

    Welcome back , I bet your really chuffed being back in the UK ?, And yes totally agree about the bread situation, Cant for the life of me why the roof of my mouth now seems to be the size of St Pauls !!!, I guess its down to the tongue issues ,and much the same for me I tend to have toast almost for most meals where bread is needed ,AND i did love fresh bread .From your post do i understand you to say you still eat mainly by mouth all beit soft foods, Have decided to buy a blender but cant quite get my head around how Cheese and Bacon on toast will taste once blended.

    Pete
    All I need is a miracle

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