Announcement

Collapse
No announcement yet.

Hi everyone

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Hi everyone

    Dear Forum Members,
    I wish to join the forum to access your helpful advice and knowledge. I was diagnosed with MND on the 30th November 2020. I’m 67, first name Kenneth, played sports all my life, mainly football until 47 and then transferred to the golf course.
    When I was diagnosed for the WHY Me Disease, it did not come as a total surprise, courtesy of Google, I ticked all the boxes for ALS /MND.
    I’ve been referred to the MND clinic but have yet to hear from them.
    I have all over twitching 24/7, does this weaken your muscles? It seems counterintuitive that my muscles are wasting away while at the same time being hyperactive.
    I appreciate any guidance you can provide

    #2
    Welcome Kenny to our community forum

    Comment


      #3
      Hiya Kenny

      Comment


        #4
        Hey Kenny, nice to meet you just sorry it was here we met. You have a million questions but here you get a million answers. Stay Strong Matthew 😁x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

        Comment


          #5
          Hi Kenny
          you are right to join us. You will never be alone. We'll do our best to pick you up, brush you down and hopefully make you feel better.
          Denise xxx

          Comment


            #6
            Hi Kenny, welcome to the club. Twitching - the way that the consultant explained it to me was as follows. The neuron (nerve) controlling the muscle gets destroyed by the disease, so the muscle has nothing controlling it. This causes it to randomly contract. This is what the twitching (fasciculation) is. The way I interpret the twitching is that the muscle that is twitching is going to be deteriorating soon. This might be complete bunkum, more knowledgeable people on here might put me right. Also, the more worried I am, the worse the twitching is.
            Each day is made easier with a bit of humour.

            Comment


              #7
              Absolutely spot on, I had facilitations in my thighs months ago and today they have shrunk to less than half their previous size, plus in my neck and now constant neck pain. Happy Days 😁x
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

              Comment


                #8
                Gary I think you are right, my husbands legs twitched like buxxery a couple of years back...........now they don't twitch at all.....trouble is he now cant walk so guess the muscle gave up the ghost,

                He now has arm and chest twitching..........so whats round the corner I wonder

                Sue
                Husband Albert diagnosed PMA Feb 21

                Comment


                  #9
                  Welcome to the Forum, Kenny.

                  To answer your question: it’s resistance, or weight, challenging a muscle over a period of time which makes it bulk up unfortunately, not crazy misfiring nerves 😯 Wish it were true, I'd be able to enter Miss Universe 🏋️‍♀️


                  Following on from what Gary said about twitches: everyday, we ask our muscles to voluntarily move to, for example, pick up a cup. That action involves millions and millions of electrical impulses being fired from the very tip of a nerve, releasing a chemical which travels across the gap between the nerve tip and the muscle, and binds to a receptor on the muscle causing it to fire and make the movement to pick up the cup. (obviously multiple muscles are involved in this ‘simple’ task)

                  If any of this happens involuntarily, i.e. you have not initiated a muscle movement, that makes a twitch, or to give it a posher sounding name, a fasciculation.

                  There isn't any correlation between intensity and frequency of twitching and rate of symptom progression but yes, twitches in ALS are ominous. I would add that ALS is a hungry disease and you may find you need more calories to keep up with your body's energy requirements - ask your Dietitian or in your Clinic.

                  Take care.

                  Love Ellie.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Thankyou for your warm welcome.
                    The information on twitching will prove especially useful in my struggle with the disease.
                    All the best
                    Kenneth

                    Comment


                      #11
                      Hello Kenny and welcome to club,
                      regarding twitching, it’s random , every time I think I know what’s going to trigger it, some other action starts it, I have found repositioning sometimes eases it,
                      does it mean the muscle going, don’t know, but I like Ellie’s answer makes sense to me.

                      on a positive note , you get to play more golf, my physio recommends it for exercise and keeping the muscles working, so when my wife complains , just following doctors orders...
                      As long as there’s golf and beer I’m happy

                      Comment


                        #12
                        Hi Kenneth

                        welcome to the forum and sorry to meet here. Lots of information and experienced people here so don't be afraid to ask even if it seems silly
                        stay safe
                        Sarah xx

                        Comment


                          #13
                          Hello Kenny and a warm welcome from me. Keep in touch and you will find support and advice from fellow members.
                          I’m going to do this even if it kills me!

                          Comment


                            #14
                            Hi Kenny. Sorry that you had to join us on this horrid journey. Good luck with getting a neurology appointment quickly and all of the services that will help you. I see that you’ve already had replies about twitching so I won’t add to that. But ask whatever else you want to. Take care, Lynne
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

                            Comment


                              #15
                              Kenny236
                              Hi Kenny just noticed it’s your birthday today, hope you are having the best time 🎂

                              Comment

                              Working...
                              X