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  • panniertank
    replied
    Thank you all for your responses. Debbie, I am sorry you had a fall and fractured your leg. And to have a blood clot in your lung must be more scary / serious than having one in your leg. Please don't beat yourself up for not being as sensible as me;- I wasn't either;- I was just fortunate that the OT and physio visited me at my home not long after the fall and expressed their concerns and made me contact my GP. Otherwise, like you I thought my sore and inflamed calf were just due to my fall. I was clueless about clots.
    Interesting that your medical staff thought that your clot was due to your fracture and not MND or immobility.
    I am on blood thinning tablets now.
    Take care of yourself as well
    Kind regards,
    PT

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  • Deb
    replied
    Hi Panniertank,

    So sorry you have had a fall and now you have a blood clot. Its another thing to deal with.

    In June I fell and fractured my leg and developed a blood clot in my lungs. I was not as sensible as you and I thought my sore calf was due to the fall so my leg break and blood clot were not diagnosed for three weeks. ( I felt like a clot myself !)

    They seemed sure the blood clot had been caused by the fracture and not my MND or even being immobile and I was given a choice of tablets or injections for three to six months. I am having daily injections because the tablets upset my tummy but that might be just me ! Initially I needed blood tests to check they have the levels right and I am now having lots of passive physio .

    I really hope your OT, nurse and physio are involved to sort out the help and transport you need but dont be afraid to chase them up. Nobody minds.

    Take Care of yourself,
    Love Debbie x

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  • Terry
    replied
    Hi Panniertank,

    The blood clot could be to a bit of both. I don't think that that many Mnd people have them but we are more at risk.

    Probably you can get hospital transport to that appointment but they normally have a two hour window both ways, so you need plenty of time.

    Guess that they have or will give you something to thin the blood for a while.

    Good luck, Terry

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  • Kayleigh
    replied
    Hi Panniertank,

    I'm sorry to hear you are having to cope with a painful leg and blood clot. I hope the treatment works quickly and the pain in your leg eases very soon.

    Hopefully your OT and physiotherapist are able to supply you with any equipment you need, such as mobility aids, to make life safer and more comfortable for you.

    Best wishes
    Kayleigh x
    Last edited by Kayleigh; 10 August 2019, 22:36.

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  • panniertank
    replied
    Thank you Lynne and Andy. I am sorry Andy that you are experiencing pain with your cramps. I don't know why I have blood clots. The hospital staff said it was probably due to reduced mobility. I was surprised at that because I am at the early stages of MND and I have been trying to walk regularly. I did read on line, rightly or wrongly, that people with my spinal rheumatic condition are at increased risk of blood clots. Anyway, I am on medication now for the clot. I don't know how long that will take to help remove the clot and reduce my pain and swelling. Either way I have been told that I will have to take the meds permanently, not just short term.
    I am fortunate that my MND clinic staff raised concerns about my swelling and arranged for a GP to visit me at home. And then the GP arranged for ambulances to collect me. Trying to get a GP appointment/ attend the appointment and then get myself to hospital would have been very difficult with the way that clot has affected my mobility.
    Last edited by panniertank; 10 August 2019, 16:54. Reason: Spelling mistake

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  • nunhead_man
    replied
    Good morning

    Originally posted by panniertank View Post
    Turns out that I've got a blood clot in my leg. I don't know if it is related to MND and/or my recent fall. But, either way I now have yet another serious health condition to contend with!!!
    Oh dear - I do hope as Lynne says that the clot dissolves fairly soon, or is dealt with in some other way.

    I was going to say that I am beginning to get real oddness in terms of pain and cramp as one of an opposing pair of muscles starts to weaken and so the "remaining" muscle and the relevant joint (In my case, left hip) takes a beating because it is not properly supported and the relevant muscles cramp.

    Warmly
    Last edited by nunhead_man; 10 August 2019, 09:27. Reason: To make sense!

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  • Lynne K
    replied
    I hope that your blood clot gets absorbed and clears very quickly Panniertank. It must be very painful. Lynne x

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  • panniertank
    replied
    Oh well I may have been wrong to describe it as spasms or cramps. My lower leg and foot and ankle were also swollen and I had to go to hospital after my gp examined it. Turns out that I've got a blood clot in my leg. I don't know if it is related to MND and/or my recent fall. But, either way I now have yet another serious health condition to contend with!!!

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  • Terry
    replied
    Hi Panniertank,

    Sorry to hear about your cramps, they are so painful. As Lynne says, many of us get them in bed which is great fun. I found quinine helped but I only took it when I had trouble and was at more risk.

    Uncontrolled stretching or over exercising muscles can set it off but sometimes it just happens.

    Love Terry

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  • panniertank
    replied
    Thank you all for your feedback. I am seeing my OT assistant tomorrow and my physio on Friday to discuss things like crutches and rollator . I can't believe I have fallen 4 times in the past 10 months. With my ankylosing spondylitis and associated osteopenia I am 4 times more likely to break a bone. With that knowledge I have always walked and done things very carefully. It was important as well to be active and do weight bearing exercises. So, as ever MND is being so cruel.
    Last edited by panniertank; 11 August 2019, 17:48.

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  • Barry52
    replied
    Hi Panniertank,

    Is it possible that you have done some damage when you fell recently? I have noticed that my cramps have worsened since I fell 4 weeks ago and the doctor said it was a result of spinal injury. Of course as Lynne has pointed out cramps are often a symptom of MND.

    Did you get a walker sorted out as it will improve your confidence? I know we have discussed shopping recently and I have learned a new tip. Like you I still drive so now I park next to the trolley bay and can get from the car to the trolley without needing my walker. Of course you need to be careful as unlike the walker, the trolley has no brakes.

    Best wishes,
    Barry

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  • Lynne K
    replied
    Hi Panniertank, very tight leg muscles and muscle spasms are an MND symptom. My calf muscles are very tight. I've had very bad cramps in them at night. But I've found that it happens when I stretch my legs. So, avoiding stretching them mostly avoids cramps. Lynne

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  • MNDConnect
    replied
    Hi panniertank

    People with MND can experience muscle spasms and pain. This is usually due to poor mobility, a change in posture and can be a reaction changes in muscle tone. Your GP should be able to prescribe some medication which will help to improve this.

    It may also be worth asking for a referral to physiotherapy as they can suggest stretches and exercises which can help to lessen the spasms and pain.

    Best Wishes

    Rachel
    MND Connect Adviser

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  • panniertank
    started a topic Muscle spasms

    Muscle spasms

    Are muscle spasms and/or pain normal in MND. I am at the early stages of MND and the worse symptom is weakness in my right leg and poor balance. My right leg seems to have worsened and I can't believe how tight the calf muscle now feels. It is also quite painful. At midday today I went back to bed for a rest. The pain stopped whilst lying down but I couldn't believe how extreme it was and the tightness when I got back out of bed.
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