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    #31
    Hi Andy,

    You should have been given a full diagnosis by the Neuro who diagnosed you; shame you weren't! Still, it gives you questions for your next Clinic visit...

    PMA is a stand alone condition involving LMNs only, so you wouldn't have "a bit of PMA" alongside "UMN Dominant ALS".

    There are better sites than Wikipedia for info on MNDs... inc MNDA's full website or there's a tab at the top of this page, "Information about MND"

    A good site to browse & search is the US's National Institute of Neurological Diseases and Stroke. Here's their fact sheet on "What are MNDs?"


    https://www.ninds.nih.gov/Disorders/...ses-Fact-Sheet

    The website has lots of info, some more scientific than others. I find it very useful.

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

    Comment


      #32
      Hi all,

      Apologies if this is the wrong thread to ask this in (but it seems to have deviated some what) but my mum was diagnosed a little over a month ago - and similarly her diagnosis seemed 'sketchy' at best, even her GP after reading the notes from the specialist who performed the electrode test (apologies I am not sure of the proper test name) wasn't convinced. As the specialist said that he believed she had possible MND as a result of said electrode tests - but she wasn't given a confirmed diagnosis of PLS or ALS or any of the other, more specific , however from reading the forum I gather other people are in the same predicament.

      Comment


        #33
        Hi Luke,

        A "possible diagnosis" meant that the EMG tests picked up issues in just one area of your mum's body, and, in conjunction with her clinical exam, gave her the diagnosis of possible MND (most likely ALS?)

        What's the next step? Has she a follow-up appointment? She'll probably undergo more testing in the future, given her status.

        It must be frustrating for all concerned, but without the "definite diagnosis", there's always hope, albeit slim.

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

        Comment


          #34
          Hi Luke

          Originally posted by YoyoLuke View Post
          Hi all,
          Similarly her diagnosis seemed 'sketchy' at best, even her GP after reading the notes from the specialist who performed the electrode test
          Yes - this was me about 18 months ago with specialist apologising for not being able to be specific becuase there are so many entry points to the "MND area" - so he has seen me at six monthly intervals since and gradually become more certain to the point of prescribing the only drug that is known to have an effect and approved in UK
          Warmly


          Andy

          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

          "Things turn out the best for people who make the best of the way things turn out"

          Comment


            #35
            OK - next step - was getting worried about fingers crooking up so have;

            a) had helpful visit from OT who has made me a splint to wear eventually over-night when I'm used to it

            b) am seeing physio to see if I can work out what exactly is still working in my arm and therefore what exercises I should do
            Warmly


            Andy

            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

            "Things turn out the best for people who make the best of the way things turn out"

            Comment


              #36
              Hi - sorry not to have reported for a while - been waiting to see how the exercises were going to go.

              The Physio pointed out that the strength loss in the extension of my fingers did not extend to my palm and wrist and so gave me exercises to re-develop my forearm and upper arm which I’d stopped using as I’d been favouring the other side and (did not say this to her) pretty depressed about it all - especially as my motor control on my right side (I’m left handed) is not as good as my left side used to be.

              These exercises involve using light free weights – I’ve just graduated from 0.5 kilos to 1 kilo!

              I’m also trying to use my affected side as much as poss e.g. just picked up a cup with my left and then had to support it with my right the first time and drank one handed the second time.

              Also always been less strong in upper body than legs – typical long distance cyclist!

              Physio also gave me some shoulder pulls to do – her perception was that I’d also lost muscle weight there from under use - left should noticeably more “clicky” than right - I use a “Meglio” rubber band thing for this tied around summat at one end and pull it - understnd this is also used for some types of shoulder injury.

              So guess with the splint etc I’m doing all I can
              Warmly


              Andy

              ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

              "Things turn out the best for people who make the best of the way things turn out"

              Comment


                #37
                Hi nunhead_man;

                Good to hear from you and I am pleased that the physio is helping you.

                If you can, write out what exercises you do and post them on the Exercise thread.

                Love Terry
                TB once said that "The forum is still the best source for friendship and information."

                It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                Comment


                  #38
                  Sorry - not been here for a while - seeing her again this am - exercises thread?

                  Also seeing GP tomorrow re rizouzole (Sp?) - three months with the vampires over i.e. blood testing so once every three months x 3 now I hope

                  Best to all
                  Warmly


                  Andy

                  ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                  "Things turn out the best for people who make the best of the way things turn out"

                  Comment


                    #39
                    Heading down to six monthly neuro check in mid December - with some oddness in my left arm.

                    I think I'm loosing some more function although the cold does not help

                    Also think that as the muscles in my arm are not balanced those that extend my fingers not working, those that contract them to grip are - kind of - then I get pain in my forearm as the two bones rub on each other in a way they are "not designed for"

                    As ever pleased I have this forum to share this in.

                    Best to all
                    Warmly


                    Andy

                    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                    "Things turn out the best for people who make the best of the way things turn out"

                    Comment


                      #40
                      Hi and welcome Andy,

                      Coming here is the best move you could have made. My diagnosis is only a week old and I find talking makes it so much easier. Stay strong and live life to the fullest.

                      Rick

                      Comment


                        #41
                        Originally posted by Rick View Post
                        Coming here is the best move you could have made.
                        Thanks Rick - and hope you do not think this rude but ....

                        No - my best move was having a go at the bod who said I had carpal tunnel syndrome and pointed out I had no pain (at that time) and the disability was not caused by the nerves in the carpal tunnel.

                        This got me to a senior neuro physiologist who suggested MND

                        And now, buggeration, have more pins and needles in the arm that has always been the problem so far so it seems I’m about to lose more function
                        Warmly


                        Andy

                        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                        "Things turn out the best for people who make the best of the way things turn out"

                        Comment


                          #42
                          Sorry - did not mean to say I find this system is very good useful for me and more so as i move on into the disease

                          Originally posted by nunhead_man View Post
                          And now, buggeration, have more pins and needles in the arm that has always been the problem so far so it seems I’m about to lose more function
                          And a strange feeling in my back - hope this is not more loss of function on the way :-(
                          Warmly


                          Andy

                          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                          "Things turn out the best for people who make the best of the way things turn out"

                          Comment


                            #43
                            Hello what part of your back ?is it where your sciatic nerve is which is at the bottom of your spine or is it further up where your kidneys are ?
                            Common problems with the back are lower back pain because the muscles in the abdomen (stomach and what some people call the belly and large and small intestine )are weak ,i'm not trying to insult you by explaining what the abdomen is ,I just used to presume that people knew what I was talking about and sometimes they didn't! sciatica is also a common back problem but you would know it's sciatica because it goes into your leg ,ankle and foot.
                            Also asthma which is a tightness in the middle of the back ,which doesn't just come from an allergy ,you would know if it's asthma if you can hear yourself wheezing .
                            Hope this helps

                            Comment


                              #44
                              Thank you for such a full reply.
                              Originally posted by Streetwise View Post
                              Hello what part of your back? Is it where your sciatic nerve is which is at the bottom of your spine or is it further up where your kidneys are?
                              Further up on the left - it is a weird kind of nagging feeling

                              Originally posted by Streetwise View Post
                              Common problems with the back are lower back pain because the muscles in the abdomen are weak?
                              Mine are quite strong through doing sit ups etc - but I do not get lower back pain.

                              Originally posted by Streetwise View Post
                              Sciatica is also a common back problem but you would know it's sciatica because it goes into your leg ,ankle and foot.
                              Indeed - not that

                              Originally posted by Streetwise View Post
                              Also asthma which is a tightness in the middle of the back ,which doesn't just come from an allergy ,you would know if it's asthma if you can hear yourself wheezing
                              Indeed and I’m not asthmatic

                              Originally posted by Streetwise View Post
                              Hope this helps
                              Certainly does - at least to exclude things
                              Warmly


                              Andy

                              ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                              "Things turn out the best for people who make the best of the way things turn out"

                              Comment


                                #45
                                No don't thank me thank autism if you ever went to N Water's at four and we are all like that you always get the typical Aspie that's the name for somebody who was diagnosed with Aspergers syndrome but I don't know whether we should get used to it as the debate about how long people want to be called that .
                                When people become a member on the forum they always apologise for doing a long post ,they never realise that some people do them pages long.
                                One of the things my mother could never tell me was what affect her symptoms had on her, she lost the ability to speak in the first three months sorry never realised that 17 years after she died this would still floor me - Describing what happened .
                                I have an ear abscess and it's tracked all the way down to my right hip so I get pins and needle in my right hand and right arm .
                                Is the nagging pain are pulling sensation if so I had that in my hip and the surgeon thought I had hip bursitis mine started because I'd lain in a bad position for a lot of hours,so I had what I now know as radial nerve palsy- what that really it is just when you lie on your hand and It goes numb but mine lasted a bit longer because I'd lain on my arm and hand ,left side for hours instead of minutes.this probably doesn't apply to you

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