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Worried, need some advice.

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  • DJW
    replied
    bandersnatch
    Hi,
    Did you, or at least think that you caught covid?

    Best regards,
    Dennis.

    Leave a comment:


  • Dougee
    replied
    Thank you Ellie much appreciated x

    Leave a comment:


  • Ellie
    replied
    Muscle tone can get very high making the legs stiff and uncooperative! If you can't quickly bend your knees in and out, for example, then an antispasmodic medicine such as baclofen or tizanidine will help. *BUT* by lowering the muscle tone (making them softer) you run the risk of losing some functionality, so it's very important to get the dose right, which can take a few goes.

    The other suggestion is to try magnesium supplements, some have a laxative effect beware.

    It's likely that your gait has changed too and that is putting extra work on other muscles not usually called into action. Ideally a physiotherapist would assess you - any chance of that?

    Gentle exercise can help too - pedal machine, swimming, depends on your abilities.

    I take baclofen which works for me.

    Best of luck.

    Love Ellie.

    Leave a comment:


  • Dougee
    replied
    Hi Ellie, hope you’re are well, I’ve tried pain killers, heat cream cold treatment,hemp , cream, foot rocker, stretching,the muscle s are so tight, I’m ok but it’s so uncomfortable, if it’s the way forward then I will suck it up and get on with it, but just wondering if there’s that relieves any bit
    love Doug

    Leave a comment:


  • Ellie
    replied
    Welcome to the Forum, Doug.

    What have you tried already, just so people don't suggest things you know do not work.

    Love Ellie.

    Leave a comment:


  • Dougee
    replied
    Hi I’m Doug, diagnosed with MND early November, can any one give me some advice, I have a severe stiff calf and lower leg muscles In my right leg, my left is wasted but I can still walk, thing is I now can’t walk 50 yards without the pain in the right leg getting me sit down, is there anything that can help I’ve tried everything

    Leave a comment:


  • Ellie
    replied
    bandersnatch Sorry your diagnosis is PMA - yes, it is one of the "better" MNDs to have, it's still utterly devasting and life changing.

    I second getting counselling - it helped me lots, especially in dealing with my children.

    The Forum is here for you if ever you have questions, need to have a moan or a rant, you don't need to visit regularly.

    Take good care and thanks for taking the time to update your thread, which can't have been easy.

    Love Ellie.

    Leave a comment:


  • Barry52
    replied
    Originally posted by SueM View Post

    Hi D, I have only recently joined this forum as I too was given a diagnosis of PMA, and this was after I was originally told I didn’t have MND. I completely understand where you are at, I’m waiting to speak to a psychologist in the hope of getting my head around it. If you can please stick with the forum, it’s a great place for advice and support.
    Take care
    Sue
    Hi Sue,

    we have a great PMA/PLS private group on Facebook so if you are interested in joining send me a private message and I will send you a link. We have a weekly chat and a monthly meeting on zoom. The sharing of tips and life stories keeps us upbeat.

    Barry

    Leave a comment:


  • SueM
    replied
    Originally posted by bandersnatch View Post
    Hi All,

    I thought I’d update this post, I hope everyone is doing great.

    Well after an extremely difficult year for everyone with this pandemic I finally got a diagnosis after 2 Neurologists, nerve conduction studies, EMG’s, several other procedures, I actually had a DatScan too, as of Thursday I’ve been diagnosed with Progressive Muscular Atrophy or PMA as I’ve been told to call it. I was actually told this is a “better” one to have yesterday!

    It went down hill after my last post and I just went on the hamster wheel of consultants and specialists. My hands have atrophy, arms and legs are weak but still very mobile.

    I’m very upset and extremely pissed off and to be honest I most likely won’t be staying on this forum but just thought I’d pass this along but felt I should update this for some reason.

    Sorry for the rant! My biggest worry at the moment is talking to my children.

    D.
    Hi D, I have only recently joined this forum as I too was given a diagnosis of PMA, and this was after I was originally told I didn’t have MND. I completely understand where you are at, I’m waiting to speak to a psychologist in the hope of getting my head around it. If you can please stick with the forum, it’s a great place for advice and support.
    Take care
    Sue

    Leave a comment:


  • Lynne K
    replied
    D, thanks for the update. I’m sorry about your diagnosis but at least, as you said it’s not the worst. I hope that your talking to your children goes ok, and you have plenty of support. Take care, Lynne

    Leave a comment:


  • bandersnatch
    replied
    Hi All,

    I thought I’d update this post, I hope everyone is doing great.

    Well after an extremely difficult year for everyone with this pandemic I finally got a diagnosis after 2 Neurologists, nerve conduction studies, EMG’s, several other procedures, I actually had a DatScan too, as of Thursday I’ve been diagnosed with Progressive Muscular Atrophy or PMA as I’ve been told to call it. I was actually told this is a “better” one to have yesterday!

    It went down hill after my last post and I just went on the hamster wheel of consultants and specialists. My hands have atrophy, arms and legs are weak but still very mobile.

    I’m very upset and extremely pissed off and to be honest I most likely won’t be staying on this forum but just thought I’d pass this along but felt I should update this for some reason.

    Sorry for the rant! My biggest worry at the moment is talking to my children.

    D.

    Leave a comment:


  • bandersnatch
    replied
    No EMG or NCS (wasn't even brought up), I did bring up the spasms on the muscles I was told was normal but it's really bad, it mainly on my legs and arms but spasms happen on stomach and even my face. It was typical that when I went to the Neurologist not one spasm, got into my car and thigh and arms go like crazy! At one stage I thought it might be coffee so stopped drinking it for 4 months and all the same. I'm back on the coffee now when I'm really tired during the day to get through work.

    Leave a comment:


  • Ellie
    replied
    Did you not have an EMG and NCS (nerve conduction study) too?

    Leave a comment:


  • bandersnatch
    replied
    Hi Guys,

    Thanks for the great responses, really appreciate it. I should have also mentioned, I have had several MRI's all clear (Brain and Spine) and had an EEG also clear. I've also been asked to get a DatSCAN to rule out Parkinsons although Neurologist says its unlikely.

    Thanks Again.

    Leave a comment:


  • Lynne K
    replied
    Hi, I second what Ellie wrote to you.

    You asked how MND starts off. Well, we are all on different MND journeys but some common things like weakness in one or 2 of your 4 limbs but saying that doesn’t exclude those symptoms being caused by something other than MND. Most of us have MRIs then one or more sessions of muscle and nerve condition testing before we get a definitive diagnosis. To have these a neurologist would have to request them, so a second opinion would be a possible route for you. Talk to your GP. He/She ought to know you better, could see changes in you so could offer advice and if they think that it’s appropriate request a second opinion for you. Good luck, Lynne

    Leave a comment:

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