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    #61
    You just got to learn to relax and let the world come to you. Don't go looking for troubles because they will find you without any outside help. πŸ‘πŸ€—πŸ˜˜πŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #62
      Good afternoon everyone. I have been doing quite a lot of reading up on types of mnd and progression etc and support recently. I was wondering if there were many members here who currently have the diagnosis of primary lateral sclerosis? From what I can gather it appears to be similar to upper motor neuron dominant als to begin with or have I not understood correctly?! I know mine is probable at this stage and I am waiting for the mnd specialist appointment soon but does the services provided at mnd clinics and in community etc still be available for patients with pls ? I was interested in if anyone here has primary lateral sclerosis what the progression of the illness was ? Many thanks for reading. I did use the search field on forums but couldn't find much posts on pls. I hope this is OK to ask. Thanks.

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        #63
        Originally posted by Zante View Post
        From what I can gather it appears to be similar to upper motor neuron dominant als to begin with...
        ...does the services provided at mnd clinics and in community etc still be available for patients with pls ?
        Yes and yes.

        ​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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          #64
          Thanks Ellie!! I hope your day has been alright xx

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            #65
            Zante I was rushed earlier in my reply.

            PLS tends to be symmetrical. UMN dominant ALS tends to asymmetrical and, even though predominantly UMN involvement, there are usually some (maybe subtle) LMN signs, clinically observed, diagnostically reported, or both.
            ​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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              #66
              Ok thanks Ellie. I think this is where the neurologist (and me!) Are perplexed because like she reported in the clinical letter with myself its asymmetrical in legs but symmetrical in arms with the upper motor neuron signs and clinical examination. The babinski was only one side positive sign but the reflexes brisk both legs and with arms hoffman's both sides and brisk reflexes both sides. I don't understand what's happening at all. And I know these are questions for the next appointment but I was hoping to know more from members experience but am not sure there are many people with pls. The neurologist has never mentioned any lower motor neuron signs so this must thankfully rule out upper dominant als I think ? It's so complicated and so different for all the types its hard to try and learn things without making yourself more confused than u started!!

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                #67
                Hi zante. Firstly dont apologise for asking us questions. You can only have either umnor lmn. There are different types of mnd such as bulbar onset or pls etc. There are other spinal diseases though that are rare and difficult to diagnose.

                I am glad you got a good g.p who acted quickly and didnt delay your referal. I cant put you at ease as its a worrying time. Please keep us updated. Big hugs.
                Diagnosed May 2021 bulbar onset als.

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                  #68
                  Originally posted by shelly21 View Post
                  You can only have either umnor lmn.
                  Sorry Shelly but I need to clarify that sentence - ALS/MND involves both UMNs & LMNs, whereas PLS involves UMNs and PMA involves LMNs.

                  LMN = Lower Motor Neuron.
                  UMN = Upper Motor Neuron.

                  ​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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                    #69
                    Is this a day to stay away? πŸ˜‰πŸ˜πŸ€—πŸ˜˜xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      #70
                      Sorry haven't had the chance to look on here recently been having a rather stressful time of it! I did browse a few times and always admire the support on here that everyone gives. Thanks Shelly for your reply. I assumed wrongly that there might have been a few forum members with pls that could indicate how their own journey was and progression etc. But my hands are worse than only the other month which is worrying me as I thought that pls was very slowly progressing. I know the consultant said the emg was clear for lmn. The mnd specialist isn't too many weeks away so I need to just wait . Difficult. But I don't have any twitching etc which others talk about so am totally relieved on that. Thanks everyone xxx

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                        #71
                        ellie it was a typo error i am trying get used to using a keyboqrd with one hand and its hard work lol. x
                        Diagnosed May 2021 bulbar onset als.

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                          #72
                          shelly21 The sooner you get a less frustrating and less tiring way to use your PC, the better - it must drain the life out of you. πŸ˜±πŸ€—
                          ​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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                            #73
                            You should try my tablet. I think it's developed AI and is set against me! πŸ˜‰πŸ˜€πŸ€—πŸ˜xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                              #74
                              This thread has badly gone off subject.

                              Like you Zante, I was given a 'Probable PLS' diagnosis after the initial PPMS diagnosis but my symptoms kept developing like you are experiencing.

                              You are at the stage where you can have the holiday of a lifetime should you wish.
                              Copyright Graham

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                                #75
                                One thing about PLS is that a good percentage of those diagnosed will eventually develop LMN symptoms. Be happy that you have the PLS diagnosis though because the lack of LMN symptoms at this point means you will live a long, happy life still. If you eventually develop LMN symptoms, it is also good because it typically demonstrates a very slow progression. Good news on both sides of that story .

                                Over the past several months you have probably learned a lot about MND's. Knowledge is power. That power will dispel fear the way light dispels darkness.

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