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  • Jude11
    replied
    Hi Ellie
    Do hope you get it sorted and without too much pain. Bonus you are not pregnant!!!!

    Judy x

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  • Ellie
    replied
    Thanks Lynne.

    I'm in a "Watchful Waiting" stage at the moment and is being monitored with scans.

    It has grown but thankfully not too painful - it's my current niggle. I can't have a general anaesthetic and hope it behaves itself by shrinking or disappearing, I don't fancy the thoughts of any op!

    They are usually removed by keyhole surgery these days, under a general, but I'd need an epidural if I were to have it removed - fingers crossed it won't come to that.

    On the plus side, at least the scan didn't show that I'm pregnant

    Take care Lynne.

    Love Ellie.

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  • Lynne K
    replied
    Hi Ellie, you aren't alone about your ovarian cyst. I was 5 months pregnant with my first child when they took out a huge one, 5. 5 inches by 2. 5 inches I was told. Are you going to have yours removed? When I had it, it was a deep general anaesthetic. Well at least it was supposed to be. I was aware throughout. Modern anaesthetics are much better and key hole surgeries for lots of procedures. Lynne
    Last edited by Lynne K; 17 October 2019, 08:51.

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  • pookies brook
    replied
    Hi i used to get severe leg spasms or juddering as i would call it mostly at night when in bed and relaxed they would start i was given botox injections every 3 months 2 in the thigh 2 in the calf and 2 in the ankle and it did the trick they completely stopped that was 5yrs ago i'm still having them now

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  • Deb
    replied
    Oh Dina, you are absolutely entitled to want to scream and stamp your feet. You have had such a rough time lately.

    I really hope you get some of your " niggles " sorted soon and that things look up for you. I also hope you get home before too long.

    Thinking of you and sending hugs,
    Love Debbie x

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  • Ellie
    replied
    Dina, you are absolutely right re the 'niggly' issues.

    An MND related issue which nearly tipped me was that one of my big toes is contracted due to the MND (bent downwards), which stresses the nail bed and caused me continuous problems. In the end I said Off with that troublesome nail, so off it came and problem solved - albeit

    And, because life goes on and we get the usual health issues, I currently have an ovarian cyst, which is a non-MND inconvenience I could do without!!

    It's the combination of several niggly issues which can make life even harder to cope with. I am lucky though, in that I am at home with my dog snoring beside me and my lovely carers looking after me ...

    Hope you have a relatively good day today.

    Love Ellie.

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  • Terry
    replied
    Hi Dina;

    Can't blame you for feeling like that. I wish that I could stamp my feet, I can sort of scream but no one hears it.

    Hugs, Terry

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  • Gillette
    replied
    Thank you for the hug, Ellie. Much appreciated. I have to admit that I'm a bit fed up as I have five niggly problems (well, some of them are causing a lot of discomfort), apart from the muscle spasms, for which I'm having all sorts of medications, including changes of antibiotics.

    Just at the moment, all I want to do is scream "It's not fair" and stamp my feet!

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  • Ellie
    replied
    Dina - just as fit as your wonderful name sake, the very talented Ms Asher Smith.

    Hope your sense of humour stays with you for the next few weeks as, by the sound of it, you'll need every last bit of it (or up the Oramorph and start Gabapentin)

    My heart goes out to you, Lovely Lady.

    Big hairy hug,
    Ellie X

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  • Gillette
    replied
    I've already had to climb over the psychological hurdle of using oramorph for breathlessness, so The Gabapentin one should be a piece of cake. All of these hurdles mean I'm getting plenty of 'exercise', don't they?

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  • Ellie
    replied
    There's also Gabapentin which can be good for spasms, Dina - it has got bad press lately due to its abuse by *some* people, but there are always genuine reasons to use it so don't be put off by that.

    Good luck x

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  • Gillette
    replied
    Thank you for the explanation, Ellie. I think I shall talk to the consultant tomorrow about one of his team contacting the MND nurses or consultant about the most appropriate medication. After all, although they have lots of MND patients through the ward, the expertise on the ward is in respiratory matters.

    I have to admit that it would be great if some things went more smoothly.

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  • Ellie
    replied
    Hi Dina,

    I’ll try to explain the difference between muscle spasticity and a muscle spasm !

    Both have the same origin, i.e. disrupted nerve signals, causing a change in muscle tone - Muscle tone is the level of tension or resistance to movement in a muscle.

    Spasticity happens when the muscle tone is so high that it can be difficult to, for example, bend a knee because the leg muscles are so stiff, it can be like trying to bend a pole. Usually an entire limb, or limbs, has high muscle tone, or the trunk. (My legs have very high tone but my arms have overall low tone )

    Baclofen reduces the overall spasticity / muscle tone, making the knee easier to bend. The drug, which is given 8-hourly for spasticity, obviously reduces muscle tone through the body, so it’s a balancing act to reduce tone enough to preserve function but not lower the tone so much as to make the limb useless.

    Some spasticity can be a good thing, especially in the legs, as it can keep you weightbearing for walking or doing standing transfers.

    Spasm is a sudden involuntary tightening or contraction of a muscle which doesn’t relax, so is more transient in nature than spasticity, but is also a consequence of increased muscle tone. Using baclofen for isolated spasm may not be an effective treatment, especially if general muscle tone isn’t high. And the dose, as I mentioned, can take a while to get right.

    Spasms can be spontaneous or have triggers - I wonder if yours are increased Dina because of positioning, posture, wheelchair etc in the hospital. Are you wearing compression socks?

    (I find that being too warm or too cold can trigger a spasm)

    You should ask what dose of baclofen you’re getting and how often.

    You so deserve something to go your way Dina

    Love Ellie.
    Last edited by Ellie; 30 September 2019, 16:52.

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  • Gillette
    replied
    Originally posted by Terry View Post
    Hi Dina;

    Baclofen that I take comes in 10mg. How many are you taking a day?

    Love Terry
    Hi Terry,

    Mine is in liquid form, through my PEG.

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  • Terry
    replied
    Hi Dina;

    Baclofen that I take comes in 10mg. How many are you taking a day?

    Love Terry

    Leave a comment:

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