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Close Relative - possible MND?

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    #31
    Yes like Mathew says, I think it will be nerve conductivity test. Not painful, just bit uncomfortable. I just wish him well

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      #32
      Nerve and muscle connection studies are done with needles connected to wires (to the machine that the specialist looks at) are placed in various places. Some hurt, others just sting a bit. I’ve had three lots of these. I hope that a diagnosis is now not too long away and that the tests aren’t too much for your dad. I was glad that my husband was with me so be prepared for a call from your dad if he feels tortured like I did. Lynne x
      Last edited by Lynne K; 14 April 2021, 12:56.
      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.

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        #33
        Thank you everyone, just setting off now, I hope I can help reassure him.
        Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

        Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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          #34
          Hello all

          Just letting you know he has had the electrode/conductivity test. He found it stung and a bit sore. However, he was relieved I drove him there and back, as he felt in pain, and couldn't stop convulsively twitching (right hand), so wouldn't have been at his best to drive. Sadly I couldn't accompany him in due to restrictions, as expected, but he is to get his results next week and isn't feeling very optimistic.

          There is a sliver of hope in the family that it may be something else, but it is difficult to keep a positive spin, I am telling him that we still don't know for sure. Whilst crossing my fingers, and praying. I promise to let you all know, if he will be joining the club that no-one wants to be in......

          Incidentally, both GP and consultant recommended he takes Quinine for leg cramps. He has tried, but, says it makes him a lot weaker so he can't do anything. Now not taking this, but, doesn't sleep properly because of severe leg cramps. He's also tried magnesium as a supplement but didn't feel it was helpful. He's already on strong pain-killers for his initial diagnosis of FM, this was years ago, is there anything folks could recommend?

          Not expecting medical advice/meds, but, any diet or supplement which people have found helpful? Thanks in advance all, and take care.
          Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

          Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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            #35
            Hi there's a few supplements that some claim help to slow progression but I don't whether actually do or just make one feel at slightly less slightly helpless ? Tudca, theracumin and I think something called elysium- see Julian's posts here. Whether they do actually anything the jury's still out

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              #36
              Positive vibes He could try magnesium supplements, CBD Oil, massage and heat for muscle cramps. If heat helps, you can get heat pads, which would be good to put under the leg in bed - many have an auto-timer, or you can use it on a timer plug.
              ​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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                #37
                Originally posted by Gordan1111 View Post
                Hi there's a few supplements that some claim help to slow progression but I don't whether actually do or just make one feel at slightly less slightly helpless ? Tudca, theracumin and I think something called elysium- see Julian's posts here. Whether they do actually anything the jury's still out
                Hello Gordan1111

                I haven't heard of those, thank you, I will suggest to him.
                Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                Comment


                  #38
                  Originally posted by Ellie View Post
                  Positive vibes He could try magnesium supplements, CBD Oil, massage and heat for muscle cramps. If heat helps, you can get heat pads, which would be good to put under the leg in bed - many have an auto-timer, or you can use it on a timer plug.
                  Hello Ellie

                  I think he's tried the magnesium, but, I don't know how long he was taking it so I will check. The CBD oil/massage sounds good, and the heat pad. Why didn't I think of that last one? Doh....
                  Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                  Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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                    #39
                    Magnesium doesn't work for everyone - if he wants to try again, tabs should be 300mg of magnesium citrate, not oxide or sulfate. Can have a laxative effect. If he already tried those and they didn't work, move on.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #40
                      Originally posted by Ellie View Post
                      Magnesium doesn't work for everyone - if he wants to try again, tabs should be 300mg of magnesium citrate, not oxide or sulfate. Can have a laxative effect. If he already tried those and they didn't work, move on.
                      Thank you Ellie, this needs to be tried, as I am not sure what version of magnesium he was taking or dosage. Anything that helps or improves his quality of life can only be a good thing.... thank you for taking the time to help out.
                      Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                      Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                      Comment


                        #41
                        Thank you for everyone's input and advice, clock is ticking on the awaiting results, late next Thursday....
                        Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                        Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                        Comment


                          #42
                          Hello all

                          Just to let you kind people know his results, sadly, it is MND... on the positive side, the consultant is fast tracking him so he will get all possible help. Still trying to take it all in.... I think I will be spending more time on here.....
                          Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                          Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                          Comment


                            #43
                            Originally posted by Positive vibes View Post
                            Hello all

                            Just to let you kind people know his results, sadly, it is MND... on the positive side, the consultant is fast tracking him so he will get all possible help. Still trying to take it all in.... I think I will be spending more time on here.....
                            So sorry to read this. You know you will get loads of support here

                            Comment


                              #44
                              Positive vibes sorry to hear that your dad has had MND confirmed but at least he will now get the care plan in motion. You may need to push the various elements of the system as I understand that delays are occurring due to Covid. One element of care that is often a post code lottery is wheelchair services and MNDA or your dad’s OT may help you with this.

                              Best wishes.
                              I’m going to do this even if it kills me!

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                                #45
                                Sorry is bad news. I think the agony of waiting is as bad as diagnosis

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