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    New to the forum.

    First symptoms appeared just over a year ago. I used to go to the gym two or three times a week and noticed I could lift less and less weight with my left arm I thought it was just a strained muscle at first and it stayed like that for a few months then I started losing all dexterity in my left hand until I couldn’t use a fork or write ( I am left handed) Again it stayed like that for another few months. I thought I had carpal tunnel syndrome ( I wish) Saw a specialist privately, this was at the peak of covid where the NHS wasn’t functioning very well.

    To cut a long story short the specialist realised it wasn’t carpal tunnel referred me to other specialists and after ct and mri scans ALS was diagnosed a month or so ago. I and my wife were devastated of course. I had read Dodie Weirs colum in the Sunday Times so knew quite a bit about MND.

    Progression seems to be speeding up a bit and my right arm and hand seems to be going the same way as the left and I am walking very gingerly have fallen a couple of times. My wife and family have been wonderful but can’t say I am looking forward to the future trying to stay positive but it’s not easy. I am 66 so just glad I didn’t get this dreadful illness earlier.

    Resigned myself to never seeing Cardiff City winning the premier league but I would probably need to live till 200 for that to happen.

    #2
    Welcome aboard the good ship MND. Fully crewed by fellow livers and 5000 passengers. Seriously though very sorry to meet you but very happy you're here. Stay Strong. 💪😊🤗😁xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Welcome

      The doctors thought that husband had something called Viking Disease, kind of like carpal tunnel.

      But it was in both hands, delay in diagnosis at little due to COVID.

      Good support and advice on here.



      Donna

      Carer for husband, diagnosed in July 2020 MND, Fail Arm type at age 56.
      Donna

      Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

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        #4
        Aidan in Shrewsbury welcome to the forum....sorry for your diagnosis. You'll know already that this is a good space to talk and ask questions. A few light hearted moments along the way.

        I agree as a 63yr old I'm thankful this didn't hit me earlier in my life....but it still sucks😞👍🏻

        Look forward to reading your posts 👍🏻
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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          #5
          Hello Aidan
          I am 75 and started in my right arm a year ago.
          I live alone and find this forum to be a lifeline.
          It's all funny

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            #6
            Aidan in Shrewsbury A warm welcome to the forum Aidan.

            I was also left hand onset - loss of dexterity and grip - went to my GP and was immediately referred to a Neurologist for suspected MS (37yo female, prime candidate for MS) but that's not what is was...

            Anyhoo, I presume you're in the NHS sytem now and hope you're well supported in the community.

            Love Ellie 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
              Welcome. Pull a chair up to the camp fire and bring a bottle.
              We are a friendly crew.
              Hi, I'm Eddie.
              Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
              Still walking and talking, and wondering what the future will bring.

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                #8
                Thanks for the welcome. It is good to be able to communicate with people who know what you are going through and has lifted my spirits. Thanks for that. Hope to become a regular contributor on here.

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                  #9
                  Aidan in Shrewsbury It’s horrible to get a diagnosis of MND. There is plenty of life after the devastating news, it’s just rather different. It’s hard to be positive, but I’m sure it helps. This forum is a great place for support and you’re very welcome.
                  Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                  Comment


                    #10
                    Welcome @Aiden in Shrewsbury - sorry you had to join us but we are a good team and look after each other. Mine started in my left foot (also a regular gym go-er and noticed things weren't right) but taken a long time for diagnosis.
                    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                      #11
                      Aidan in Shrewsbury hello and welcome, I’m sorry you’ve had to join us. This is a friendly forum where you receive good advice and support from fellow sufferers. Best wishes
                      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                        #12
                        Early days for you, but try to keep positive and be willing to adapt. You can deteriorate in short bursts, but also many people can have long plateaux when things can be quite stable. X

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                          #13
                          Originally posted by Olivia H View Post
                          Early days for you, but try to keep positive and be willing to adapt. You can deteriorate in short bursts, but also many people can have long plateaux when things can be quite stable. X
                          Thanks for that advice. I think I did plateau for quite a while. It was just my left arm for many months before my left hand went then I think I deteriorated in a quick burst as my right arm and hand went bad along with my walking. Am seeing a neurologist next Monday to get a prescription for Riluzole which I hope will slow the deterioration down.

                          Does anyone have the experience of taking Riluzole at this sort of stage and it did slow deterioration down?

                          Comment


                            #14
                            Originally posted by Aidan in Shrewsbury View Post
                            Does anyone have the experience of taking Riluzole at this sort of stage
                            I started taking Riluzole within days of my diagnosis, most people who opt to take it start within a few months of their diagnosis - the thinking is, the earlier it is started, the better.


                            Originally posted by Aidan in Shrewsbury View Post
                            ... it did slow deterioration down?
                            Ah, that's an impossible question to answer because nobody knows how we would have progressed had we not taken it...

                            In clinical trials, Riluzole showed a delay in requiring ventilation assistance.


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

                            Comment


                              #15
                              Aidan in Shrewsbury Welcome to the forum Aidan. I am a carer for my husband who is in his fifth year since diagnosis. No strength at all in hands and arms but still walking albeit slower. He is 70yrs of age. His breathing became a problem before diagnosis so has used NIV since diagnosis. He has taken Riluzole also since diagnosis. Take care and be kind to yourself xx

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