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Why do people expect a diagnosis in this forum....😡

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    Why do people expect a diagnosis in this forum....😡

    Sorry all just a little rant from me....highly inappropriate I know as I'm a newby. Why oh why are people posting here asking do you think I've got MND!!
    My right big toe is hairy and I've a twitch in my left ear lobe...you know that kind of thing.
    It's probably just me being over sensitive but really lacking empathy for those here truly managing this life changing/limiting thing. Feels a bit like ppl slowing down at a major motorway pile up to get a look.
    I don't need replies really just sounding off.😠

    Apologies for any offence caused...end of rant 😈

    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

    #2
    Linda

    I'm not sure. Might be they don't really want to know and ask us hoping we'll say no it isn't. Or they want to know but don't want to go to a GP. Or they've been waiting for a referral and it's taking so long.

    I'm not sure. They should write it all down and seek professional advice. It's the only thing anyone can do. Mnd is different for everyone so it would be difficult for any of us to say bit like licking your finger to see which way the wind is blowing.

    Only professional medical people can determine if anyone has mnd.

    sorry if no wants to hear this but it's true.

    Denise

    Comment


      #3
      Linda I joined here months before my first post and just read what folks were saying, even when I did my first post I thought about it long and hard, its not a place anyone wants to be is it, but I was getting to the end of my tether, at that point more than 18 months into "yes it is" "no it isn't", I suppose people really come on for support which I did get.

      When these diagnosis take for ever I can understand people coming on prior to knowing exactly whats what and asking questions because their heads will be all over the place it was such a massive weight to bear for me and all the while not knowing if Albert had this damned disease or not.

      To me its an open forum which needs to be available to those in any doubt and they should feel able to ask questions, ok not keep asking the same questions as some do,but perhaps a shove in the right direction ie MNDA connect helpline or whatever will be helpful to these people in such turmoil after all its people on here that have all the compassion we newbies need at our most lowest of all times.

      Sue
      Husband Albert diagnosed PMA Feb 21

      Comment


        #4
        Originally posted by denise View Post
        Only professional medical people can determine if anyone has mnd.
        This is, of course, indisputable, and naturally, the vast, vast, vast majority of those who post "absolutely convinced" that they have "ALS Symptoms", turn out *not* to have it.

        To me, this comes as no surprise as their symptoms were never *those of a person developing ALS, however most are so caught up in their conviction/fear/anxiety, that they cannot see the wood for the trees, so find it hard to listen to/hear a rational and logical rejection of their thesis and cannot seem to let it go and are not satisfied by being told, after testing, that they do not have an MND.

        The forum does allow for undiagnosed people to post of their worries they may have an MND, which I don't think any one of us has a problem with, but when people who have categorically told they don't have an MND, having been through the diagnostic process *and* have symptoms which are *not* MND symptoms, persisently post telling us, the diagnosed, that the doctors are wrong, we are wrong, and that there is nothing else but an MND which is afflicting them, that is when my patience wears thin.....

        I know of people who waste years of their precious lives fixated on the notion they have an MND, which, as a person living with a ticking time bomb inside me, just makes me sad.



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

        ​

        Comment


          #5
          Hi LindaB

          This forum is a public free space for people to use for guidance and support however they wish.

          As there are many different symptoms of MND, it can be difficult and take a while to fully diagnose, and we understand that people may have wide-ranging worries and concerns and want to be able to ask those questions. Whilst we would always advise seeking professional help wherever possible, that may not always be available immediately.

          Our aim for this forum is to be a safe, friendly space where members can offer support to others who have had or going through a similar experience. It maybe frustrating for some seeing the same questions coming up over and over again, but remember there are people on here who are at different stages and one of our forum guidelines is to be respectful and kind to each other. We wouldn't feel comfortable in limiting the types of questions that can be asked on the forum, that's why we have the MND Connect helpline team on hand to help answer concerns people have too.

          We hope that makes things a bit clearer,

          Forum Admin.
          Our working hours are Monday to Friday 8:30am until 5pm

          Comment


            #6
            Linda, you’re not alone.
            I stay off this forum for long periods due to being fed up of the type of posts you mention.
            They seem to want to have MND. Why?
            Best ignore them, stay positive and keep smiling.

            Andy x
            Sporadic MND/ALS - Limb onset - Diagnosed May 2016
            night time NIPPY, cough assist, PEG (not currently used)


            Today is the tomorrow I feared yesterday

            Comment


              #7
              It's a mental illness 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

              Comment


                #8
                Originally posted by Admin_MND View Post
                It maybe frustrating for some seeing the same questions coming up over and over again [...] one of our forum guidelines is to be respectful and kind to each other.
                Those "respectful and kind" forum guidlines must also be upheld by the forum members who, although cleared by Neurologists of any possibility of having an MND, insist the Neurologists are wrong and that they are still 100% certain they have an MND.

                You must realise how utterly distressing, upsetting, unkind and disrespectful it is for the forum memembers who are diagnosed, and for the family members, to read persisent posts from those few members insisting they have an MND, when it's clearly obvious they do not.

                I must stress that it is in no way all of these "Worried I May Have MND" members who engage the forum in this way, but there is a significant percentage of them who do. I personally think people should have a safe place to air their worries. To this end, I wonder if all these posts would maybe be a better fit in the MNDConnect sub-forum, to be dealt with by the team, and only the team??

                Thanks for reading and I hope you can understand where I'm coming from.

                Love Ellie.



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

                ​

                Comment


                  #9
                  I remember how anxious I was for 6 months before diagnosis.Anxiety can be very overwhelming and I was desperate to talk to somebody who understood the worry pre diagnosis.
                  MND connect really helped me by listening to my concerns as I got nearer diagnosis.
                  However if a person has been through diagnostic tests and had confirmation that’s it’s not MND then nobody on here can change that medical decision.
                  I get a lot from this forum both emotionally and from practical advise.
                  Best wishes
                  Mary

                  Comment


                    #10
                    Originally posted by Ellie View Post

                    Those "respectful and kind" forum guidlines must also be upheld by the forum members who, although cleared by Neurologists of any possibility of having an MND, insist the Neurologists are wrong and that they are still 100% certain they have an MND.

                    You must realise how utterly distressing, upsetting, unkind and disrespectful it is for the forum memembers who are diagnosed, and for the family members, to read persisent posts from those few members insisting they have an MND, when it's clearly obvious they do not.

                    I must stress that it is in no way all of these "Worried I May Have MND" members who engage the forum in this way, but there is a significant percentage of them who do. I personally think people should have a safe place to air their worries. To this end, I wonder if all these posts would maybe be a better fit in the MNDConnect sub-forum, to be dealt with by the team, and only the team??

                    Thanks for reading and I hope you can understand where I'm coming from.

                    Love Ellie.


                    Hi Ellie,

                    Absolutely and if we see any of these posts we do tend to move them into the MND Connect thread as we have today with one that was posted elsewhere.

                    Please feel free to privately flag any others you see with us.

                    Thanks,

                    Forum Admin
                    Our working hours are Monday to Friday 8:30am until 5pm

                    Comment


                      #11
                      I was praying that it wasn't MND since my GP first
                      mentioned it until the ENT confirmed it.πŸ€—πŸ˜˜πŸ˜xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                      Comment


                        #12
                        We all feel for people going through the agonising uncertainty of tests for MND. Once it is suspected it's hard to think of anything else. I also am very sorry for people who suffer from health anxiety. However, an MND neurologist who has the results of a barrage of tests is sometimes reluctant to make a definite diagnosis.. mine referred me for a second opinion before confirming it. Our symptoms vary so, as forum members, all we can say is how we were initially affected.

                        I'm not being uncaring and I know the fear of a diagnosis.but I struggle when people post a letter clearing them of MND but still think they have it..I'm glad for them obviously but what would we or our loved ones have give for that letter ?

                        Just my thoughts,
                        Love Debbie x

                        Comment

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