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    Hello

    Hi I’m Sue, I was diagnosed with progressive muscular atrophy type of MND in September this year. I have had symptoms for over 2 years progressively losing strength and the use of my right arm and hand, and now with further weakness in my left arm and hand. My shoulders and neck are also involved. It’s been a difficult time as I was originally told it definitely wasn’t MND, plus I fell into the Covid trap of not being able to have a muscle biopsy, now not needed as diagnosis came from further EMG studies. Although I have been seeing a Neurologist I was referred on to a MND Specialist, once again the Covid thing struck and my appointment was cancelled, but remade for a few weeks time. I am worried for the future, mostly the unknown, but pleased I’ve found this forum.

    #2
    Hello Sue, we have all been where you are right now. You've come to the right place for help. 👍😃x

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      #3
      Thank you Matthew, it’s good to have the chance to chat and get support

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        #4
        Welcome to the forum, Sue. Lots of friendly folk here who understand what you're going through, because we're going through it as well. Don't be afraid to ask anything no matter how silly it might seem.
        Each day is made easier with a bit of humour.

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          #5
          Welcome Sue.

          As you found out, PMA can be hard to diagnose, certainly it's not as 'straightforward' as diagnosing the much more common ALS form of MND.

          I hope you continue to have such slow and limited progression - although I'm quite sure it feels very debitating to you...

          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.

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            #6
            Thank you Gary, have been working my way through recent posts on the forum and am pleased to find there are plenty of folk giving some really good advice

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              #7
              Originally posted by Ellie View Post
              Welcome Sue.

              As you found out, PMA can be hard to diagnose, certainly it's not as 'straightforward' as diagnosing the much more common ALS form of MND.

              I hope you continue to have such slow and limited progression - although I'm quite sure it feels very debitating to you...

              Take care.

              Love Ellie.
              Thank you Ellie, I appreciate each of us will all be experiencing different things but yes I am trying very hard to get my head around what I am no longer able to do but focusing on what I still can manage. Basically trying to stay positive!
              Love Sue

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                #8
                The mental battle is harder than the physical one. 😉x

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                  #9
                  Originally posted by matthew55 View Post
                  The mental battle is harder than the physical one. 😉x
                  But at least the mental battle is winnable...
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Hi Sue,

                    A very warm welcome to the forum from me.The early days are so overwhelming and the diagnosis is so shocking. It must be even harder for you to be facing this through COVID times and have tests and appointments postponed.

                    I hope you have support around you and its great you've found our forum. Its a good place for support, friendship and practical advice.

                    Like you, I try to be positive and make the most of every day.
                    Take Care of yourself, Sue.
                    Love Debbie x

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                      #11
                      Hi Debbie, thank you, it’s good to have this forum as I’m sure I’ll have lots of questions going forward.
                      love Sue x

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                        #12
                        Hi Sue, welcome to our forums. As others have said you’ve found the right place for friendship, advice and support. I hope that you stay on a slow progression of this cruel disease. Chat soon, Lynne x
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                        I'm staying positive and taking each day as it comes.

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                          #13
                          Hello Sue and welcome to the forum family.

                          You will find support and advice here and occasionally a bit of humour which lifts our spirits and keeps us going. I am also a member of a group for PMA/PLS which meets via a Facebook private group on Thursdays at 8pm. Once a month we have a zoom video chat. If you wish to join us please send me a private message with your email and Facebook login.

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

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                            #14
                            Hi sue
                            looks like everyone has said what I was going to say so I shall just say hallo and welcome
                            Denise 😁

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                              #15
                              Thank you Lynne, Barry and Denise for your welcomes.
                              Love Sue

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