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    Cramping today

    Having a crampie day, got up 7am done a car boot selling things we don't have a need for anymore, finished around 11am started driving home got cramp in left shoulder ooh painful. Got in then my right hand started. Limb onset ALS diagnosed 5 weeks ago been in the MRI scanner just started taking riluzolealso taking tudca. Question is how often will this happen? Does it mean my arms are gonna stop working soon? Scared if I'm being honest with you. How can I slow this down?

    #2
    Hi Steve,

    Riluzole is the only way of slowing down MND. However staying fit and healthy for as long as you can pays dividends too but it doesn’t stop progression.

    MND progression is not linear and the rate and path of progression is individual. My onset was in my fingers and hands which (because there are a lot of muscles there) meant I could carry on with some function for quite some time. In fact even today after 8 years of symptoms and 6 years post diagnosis I can still get some movement out of the fingers on my right hand…. although not enough to do anything useful mind 😕

    I found the cramping came and went again during various stages of atrophy. I think my calves were the most painful…….but there is some good news in this, my consultant suggested a gin and tonic to help 👍👍👍👍

    James
    Foxes Never Quit 💙

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      #3
      Thank you James much appreciated

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        #4
        Steve I get a lot of cramp in the shoulders and neck especially when driving even short distances. I bought some magnesium 375mg supplements from holland and barrett and definitely get cramp less and far less frequently at night too.
        Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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          #5
          I no the feeling I have been up since 4 30

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            #6
            Originally posted by Stevedp View Post
            Question is how often will this happen? Does it mean my arms are gonna stop working soon? Scared if I'm being honest with you. How can I slow this down?
            Oh Steve, it is scary, and that's putting it mildly and politely 😬

            Often cramps and spasms happen when you ask a muscle to do something which is too much at that moment in time, perhaps because a muscle, or muscle group, had been overworked and needed to rest up for a while.

            So, it doesn't necessarily mean that your arms will stop working soon, but it does mean that you need to maybe pace yourself - your arms were likely working hard all morning...

            As you're so recently diagnosed, try get on a clinical trial, preferably the CENTAUR Trial (AMX0035) which is active, or imminent, across several locations.

            Take a look at the ALSUntangled website for reviews on various supplements, you won't read them all but, of those you do, include the review of Acetyl-L-Carnitine (ALCAR)

            Take Riluzole if you cand and, if cramps become an issue, magnesium supplements are a good supplement to try, before heading down the meds route. xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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              #7
              Thanks Ellie

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                #8
                My husband is now completely immobile, but the only area where he has suffered cramps are his calf muscles. He has taken BACLOFEN since soon after diagnosis - perhaps this helped ???? So cramps did not indicate where progression would be in his case, but everyone is different.

                Good luck to you on your journey. xx
                Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                Sense of humour intact throughout.

                Sadly passed away peacefully 2/9/22

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                  #9
                  I get excruciating pain in my neck and shoulder but it comes and goes. Is that the norm? I was thinking of having physio, will that help? . I do take Riluzole.

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                    #10
                    Madge Can you get your clinic Physiotherapist, community/hospice Physiotherapist, GP or MND Nurse to give an opinion as to the cause of the pain first?

                    The reason I say this is because some private Physiotherapists have a one-track mind, i.e. that the muscle needs to be repaired and rebuilt, rather than be managed, so the treatment can be too aggressive and might hurt.

                    If you know of a Physiotherapist specialising in, or with experience in neurological conditions, you could see what they think.

                    For me, my neck and shoulder pain is caused due to muscle strain, spasming muscles and joint instability, ultimately caused by muscle weakness. I've had steroid injections, nerve blocking injections, take antispasmodic meds and wear a neck brace - I'm not saying this is your problem but I was under the care of a hospice Physiotherapist who assessed me.

                    Hope you find a solution xx
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                      #11
                      Funny you should say Ellie as I have made contact with physio at my hospice and she will visit me in a couple of weeks time 🤞thanks Ellie x

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                        #12
                        That's great to hear Madge xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                          #13
                          Hello Steve,
                          regarding cramping, early in my diagnosis I used to get quite bad and regular cramps in my hands and legs, but the number of incidents have reduced over the past couple of years and probably happen a couple of times a month. They occur now if I am driving for a long time, or grip things the wrong way.
                          Hopefully as you get used to it you will learn what actions seem to set it off and try to avoid them, or approach the physical action in a different way.
                          I find regular stretching exercises and using hand splints have also helped to reduce cramping.
                          My personal experience does not show bits are going to stop working imminently, but I have to add …we are all different.
                          s.
                          As long as there’s golf and beer I’m happy

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